The additional pathology results say semi-encouraging things like “no immunological evidence of lymphoma” but also aggravating things like “etiology cannot be concluded based on this analysis.” Dr Fox will be taking his case to their tumor conference on Tuesday and hopes to know more after those experts discuss it. He also mentioned sending samples out to other experts.
Also, there are still some rare slow-growing bacteria and fungi that need up to 30 days to culture, so “probably an infection, but it’s too weird to be sure” is still William’s “diagnosis.” Maybe the discussion Tuesday will lead somewhere, or maybe one of the remaining cultures will clarify, or maybe an X-ray in a month will tell us more, or maybe an X-ray and MRI in a few months will tell us more, or maybe genetic testing in January will tell us more. Or maybe it will just be “fine for now” and was probably an infection, but in that case there’s no way to know it’s gone!
In the meantime, his stitches are gone, and in a month, he should be walking or close to it. And he’s thinner than ever before, so thin you can see his whole skeleton, and he still has no sense of smell and retains his baby teeth and has a very funky shaped rib cage—- and killer comic timing! And an awesome new school! And no other lesions that we know of currently, but how would we know?
Pray for my impatient soul to somehow not explode! And for it really to be an infection that happens to be knocked out by cephalexin and never returns.
And pray with gratitude for all the help and patience and love around this whole family!
Some folks know and some folks don’t, and there has been a lot of rapidly changing and ambiguous info that has gotten confusing, so if you know my son William and want the medical situation explained in a concise, clear way, here it is.
W’s knee has always hurt off and on, and it worsened through the past year. After one really bad night, an X-ray showed an unidentified lesion on it where bone cells are growing. A mass/blob/spot of some kind, maybe a tumor or cyst, possibly cancer, maybe an infection.
We went to Hershey Children’s the next day for an MRI (with equipment of a type that is unavailable in our rural/college town). Two weeks in the hospital and two bone biopsies later (one needle, one open), he was released with a femur minus one chunk, some hefty antibiotics, crutches, and a wait for results and for the femur to heal.
it’s none of the usual, most common things they see all the time. So, not an obvious Ewing’s sarcoma or an obvious typical benign bone tumor.
Based on a needle biopsy, they told us “it’s not cancer” because those common things were ruled out and SOME of the bloodwork supported it being an infection (high platelets and inflammatory markers). So, they started the antibiotics at the hospital under the presumption that infection was most likely.
But then, the pathologists from the first biopsy still couldn’t agree on ‘what is it? We have cells that are definitely abnormal, not like any of the stuff we see often, so what is it?’ In other words, they just weren’t convinced they knew enough to say “definitely an infection”— because they DID see some weird cells and some weird bone growth activity happening, just couldn’t tell what it was.
so they brought it to a committee of further pathologist people and extra specialized experts, who said basically, ‘yeah I don’t know either… but I sure wouldn’t let it go. Something weird is definitely happening in there, and if it were me I don’t think there’s clear enough evidence here to rule out malignancy altogether— and even if it’s a benign tumor, you’ll need to know what kind in order to know how to treat it.’ Obviously I am quoting perfectly with all this high-powered medical language haha!
So, an open biopsy was done by Edward Fox. Samples went back out to all the same experts and also have been having another more complex and fancy process called flow cytometry. I had to Google it.
The bacterial cultures of those samples are all done. Cultures have grown zero bacteria or viruses or anything (that can happen and still be an infection though)
But, if an infection, then theoretically he’d have had a fracture before by which blood with bacteria in it got in there, and then it grew in the bone marrow. Still possible, but not simple since there wasn’t any obvious trauma.
Killing the infection is probably happening now (if it’s in there), BUT then they would look to underlying disease or something to get to why an unbroken bone was somehow compromised such as to let bacteria in there? Bones aren’t supposed to be that permeable. Hence the genetics and other stuff would come in. We have a geneticist appointment in January (it’s necessary that the more emergent situation be treated first, though they are looped in on the results as we go).
So, maybe a tumor is more likely than infection, or preceded an infection…. But a tumor of an unfamiliar type. That’s what the pathologists are still working on now. They’re looking at it and running time consuming labs on it, and maybe meeting and talking to each other to try to see what they see, and most likely, if they don’t know for sure, then calling other super top people around the country and saying “hey, we’ve got this kid…” and getting consultation.
The appointment with Dr. Fox, bone disease hero, on Sept 1 is partly just looking at how his biopsy wound is healing up. They’ll X-ray and stuff.
But also he’ll share any findings, or if it’s still not clear, refer to further tests or experts.
So, on September 1, we may or may not find out that he may or may not have cancer or another kind of tumor or an infection.
We wait in uncertainty and try to care for our family emotionally and materially for now. When we know we know.
In W’s own words: “there was something weird on my leg bone, an infection or tumor or something, and they had to cut out a chunk of it to figure out what it is.” And we’re all practicing just doing our best to stick with what’s true now rather than polluting the water with “what ifs.”
William rolled into the school year at Delta Middle on wheels! While he’s getting around great on crutches, they’re exhausting, and while he also drives a mean walker, it’s frustratingly slow. So, thanks to friends who shared a youth wheelchair, a school nurse who’s not only highly qualified but also had some relevant mom experience, and a school community that is literally built on the idea of having a school community, he had a great first day. The basic vibe was “yep, found my people.”
Since both kids AND both parents had first days of school this week, as did almost everyone in our circle as either an educator, a parent, or just a resident of a newly jam-packed college town, it’s been hectic. But, Jason and I have been able to trade off schedules, Beth has swooped in with incredible backup, and the rest has been patched together more-or-less successfully. Colleagues have helped me to adjust my courseload to a more manageable configuration, loving friends and neighbors from school, work, church, and everywhere have been showing up with meals and gift cards, and I’m basically astounded by the ways help like this really does help. I love the students in my face-to-face course, and my asynchronous online students are patiently waiting for me to get them started a week late. Our other kid is doing well too (but a Mom-initiated update to the internet would not be welcome, so you will have to ask her yourself if you see her)!
Also, a true emergency does have a way of helping us not to care what others think of how we’re doing! “What I was able to do in the time I gave it,” along with an apology for anything beyond that, is the new standard of accomplishment, and although it sucks to have a sick kid, I am counting this awareness of priorities as a side benefit that I do appreciate. Still unknown what is actually wrong with William’s femur and what lies ahead. Bloodwork and microbiology yielded no new information, he goes on with antibiotics for now, and September 1st we’ll visit his surgeon (Dr. Fox, a superstar bone specialist), and see where we are then.
(Yeah, I said it! Should! I am telling you what to do, and I don’t even care if it’s polite. I’m right here. Go look. Seriously.)
They’re pictures of as far away as anyone has ever been able to see, and for that reason, they’re also pictures of as far back as anyone has ever been able to see. (Because light emitted far away has taken a long time to reach Webb to be photographed. Ask your science teacher!)
They’re beautiful. So, to me, is their unfathomability. I want the universe to be deep and unknowable just as strongly as I want to know it deeply. But what what I most love about the Webb images is how they not only depict things we knew about in more detail, they also show many, many things we didn’t even know to look for. (Literally, many of the major scientific findings so far from Webb have been simply background stuff, small things off to the side of or behind something more dramatically centered in the image.)
That’s the attitude I am trying to take as I experience a similar look at my own past. It’s one thing to deal with my own feelings about having been sexually abused by gymnastics coach/clown/camp games teacher Mike Spiller, which I have had close to 40 years to work on, along with professional help. I’m good! But it’s something new to look at those same memories and feelings, this time with my adult lens and with a completely different set of resources and allies, and see things i hadn’t even known were there. Through these new eyes at this new time, with the help of others looking into Mike Spiller’s past (where it intersects with my own but also beyond that), I see so much more. I see how much bigger the context was. How it fit in to a culture in gymnastics, in Houston, in 1983. How many others were around who had to have known and looked away. The other girls, maybe now grown-ass, pissed-off women like me, who thought we were alone, were believed and/or doubted and/or helped or not. It’s all bigger and broader than it felt when it was a private story. Like looking at your kindergarten class picture, and remembering this kid on the playground and that kid in math class, but also knowing for the first time what each kid was thinking, what was going on at home, how the teacher felt and what all of it showed about that time and place.
That’s what it feels like to be involved, however marginally, in current investigations of the man who sexually abused me when I was a kid. Lots of discoveries, big and small, some answering questions I hadn’t even known to ask. These are accidental discoveries, and some of them are not easy ones. Yet it’s as Dr. Kirkpatrick says: “We’re going to have to figure that out.”
You can have that open-minded feeling of acceptance and curiosity, like she seems to have about the outer space she’s scrutinized for her whole career and like I mostly do about the inner space I have scrutinized just as ardently. I can’t help wanting to hug Dr. Kirkpatrick, or maybe send her a stiff drink. The Nature piece ends:
In 1983 and for a while after, the gymnastics center in Northwest Houston that I attended held sleepovers. These were fun extras, like the lock-ins a church youth group might have. But, beyond the normal kid fun of a sleepover my friends, something else happened. My coach, Mike Spiller, whom I adored and whose attention and approval I craved, sexually abused me.
And while I have many, many stories about that in my own life, THIS short post is really a LONG story about how almost 40 years later, he is still immersed in working with youth at camps and gyms. Finally, after almost 40 years, he is under investigation and is temporarily restricted from any contact with/in/via any USA Gymnastics-affiliated entity, as shown on the public database of USA Center for SafeSport.
In fact, I know I am not alone, since I am not the only complainant in the investigation.
Mike Spiller has most recently been working in Boerne, TX and the San Antonio area. He began his career at a University of Texas gymnast and then as a coach beginning in Houston, TX; since then he has worked all over Texas as well as New Mexico and outside the USA. If you remember him abusing you or someone else, or even had suspicion of such, please contact SafeSport, which you can do online with or without anonymity. Or, contact me using any of the means on this site.
Please consider sharing with every Texan, gymnast, journalist, or human being that you know!
Ironic? Now serving as Safety Monitor for a USA Swimming event.
Do you have a to-be-read list? Or shelf or pile or bags full, like my kids and I do? Are you such a cool reader kid you call it a TBR? There’s an art to the TBR, and I don’t have it. Take for example my friend and colleague Rob, who one magical year actually accomplished the impossible of actually reading all the books on his TBR shelf before buying more. Not me; it’s just piles everywhere and then I grab whatever, or I end up ordering from the library/internet anyway.
I have a TBW list. I think many of us do, whether we know it or not: these are the stories that may matter most but also can be hardest to tell. What Glennon Doyle calls your “truthiest truth.” And I don’t know about you, but these years since the pandemic began, or maybe it’s since Trump, or wait maybe it’s since… all the wrong and sad and overwhelming things ever… These years have showed me some TRUTH. And the more I know what is true, the more I have to write about it.
And it’s super scary.
What if it hurts their feelings what if they don’t believe me what if it doesn’t count what if I am wrong what if I can’t what if it’s stupid what if nobody reads it what if I’m crazy what if i regret it what if I show too much real me what if what if what if kind of scary.
Here’s the list of things To Be Written in the coming days and weeks. Hold me to it.
How Mike Spiller, my first gymnastics coach in Texas, fondled my crotch while “massaging” me in a tent of gym mats at a lock-in in the early 80s
How Mike Spiller is still active in gymnastics and other youth camp settings, to my horror and stupid surprise
How I didn’t realize what Mike Spiller did was bad at first, so starving I was for affection and approval
How I did tell what Mike Spiller did, but not right away and not firmly enough, maybe
How I lived out a life for the almost forty years since then, in all the messy and fucked up ways people live lives, but with the additional mess that Mike Spiller left behind for my head
How I work at Penn State and did not re-report Mike Spiller even when child sexual abuse was all anyone talked about
How I watched the trial of Larry Nassar and did not re-report Mike Spiller
How I recently reported Mike Spiller to USA Center for SafeSport
How it appears that I am not the only one who has something to say Mike Spiller
How now I am doing everything I can to encourage others who may have similar experiences with Texas gymnastics coach Mike Spiller to contact me
And whatever happens from there.
Thanks to the many people who have tried to love me at some point since 1982 and have recently answered questions when investigators have gotten in touch. I’m diving into the big scary TBW.
My son has a very, very cheap laptop, and I’ve been surprised how little he uses it. He likes gaming, coding, writing, making videos and podcasts, and all kinds of graphic arts, and this device was a gift for him to expand his skills, to play around in the more powerful and flexible environment of the PC as compared to his locked-down school-issued chromebook.
And yet, he’s taken it out maybe twice in six months– all the while watching video after video about things he wants to someday do on it. What’s stopping him?
Finally, last time he took it out, I sat next to him on the sofa and watched over his shoulder. Nine year old boys don’t necessarily love their moms doing this, so I had my own computer open as a decoy. I’m sure he was completely fooled! From this vantage point, I saw it. He’d be typing text, maybe into a document or, in this case, a Minecraft command line. Being a human being and a nine year old and my genetic descendant, he’d make a typo every other word or so. And just as I have done three or four times in the last line or two, he’d reach up to the backspace key to go back and change it. All typical. Until, seemingly inexplicably, his whole machine shut down. “Argh! I hate that!” he yelled, then powered it back on and waited. And waited. Then clicked on the program he had been using and waited. And waited. And waited. (I said it was a cheap PC).
About two minuted later, it happened again. Again in another five. Finally I saw what was happening: the Power button was somehow, stupidly, right next to the Backspace button. Apparently this is a thing. And has been for at least 11 years as seen on Reddit, the mothership of internet ranting. WHY?!? People have the actual job of designing computers, and they suck at it.
How perfect a metaphor for writing, though! So often we seem to power off when only a backspace is necessary. Sometimes I’ll be working on a piece of writing and, sometimes after writing many thousands of words, realize I don’t like what I am doing or that I need to change my approach. Reaching for the Backspace button, I realize I don’t yet know how to fix it, and I get so discouraged I can’t make myself work on it at all. Power off! I’ll go hide out in email, or course prep, or more likely eating chips in bed and feeling bad about not writing. It feels safer.
In fact a lot of learning can be like this, too: take for example groups I’ve led or participated in where the aim was to understand and address racism and systemic inequities. As a white educator working among other educators who are predominantly white, so often the work requires unlearning things we thought were true about ourselves and/or the systems in which we work. Backspace! Envisioning change, we find we will have to take apart things that are awfully firmly cemented, like curricula or policies. Backspace! And then racism is so everywhere, and so very baked in to the entire American educational enterprise (big, collective Backspaces) and into our own socialization as human beings and as teachers (backspaces) and the more we look at it the more those backspaces might slip and Power Off. After all, it’s hard to keep mind of one’s own power to effect change in systems that we not only work in but have also been shaped in. It’s…a lot. To say the least.
I fixed my son’s keyboard like this. I am apparently an engineering genius!
I have found that when it comes to writing, this same strategy of adding a barrier works pretty well. The more we can make it impossible to shut down, the better we’ll do. So I do things like make writing dates with friends, switch to freewriting or speech-to-text, use Focusmate, and/or promise writing to people so that it’s just harder to hit Power and quit writing.
What about the learning communities doing that hard work of subverting racist and other oppressive conditions in education and in the world? The work of making deep change, and of learning deeply, only really gets done when we choose to be there. So while covering the Power button might work on the keyboard, in a learning community part of the work is actually learning how NOT to “Power Off” even when the button is right there. We could quit any time. So many have, and many more have not even begun the work. Yet we keep on showing up, writing our ideas and intentions toward greater freedom and teaching that liberates, Backspacing when we need to while keeping the power On.
I’ve mentioned how 30 consecutive days of blogging in March renewed my desire to be writing as a way of being in my life. It’s as though I have remembered for myself all the things I so regularly structure or recommend for others: write informally. Write long and short and fast and slow. Write incompletely. Share writing. Springboard from the writing of others. Make writing social. Write to find out what you want to write. Write to discern what is true. And write the truth, what Glennon Doyle would call “the truthiest truth.” The truth that I know is true when I get really, really quiet, close my eyes, put my hand on my heart, look inside, and ask myself “what do I know right now to be true?”
As those first five days became ten, twenty, thirty, I felt I was living closer to my truth and writing more fluently from it than I had done in a long while. I learned again what I already knew: that I really do wantneed to be writing about most everything, most all the time.
Since “the 30 day challenge” has ended, now it’s simply “the challenge” every day. Apparently I am not blogging every Tuesday, though I still dream. And while I am not posting daily, I am actually writing daily if I count all the writing that “doesn’t count” in many of our minds: lists, post-its, voice memos, notes to self, jottings in a conversation, additions to my book shopping cart/TBR list, texts to my truest partners in truth-telling, sentences I write in my head as I listen to interesting podcasts.
This is the truth that I have recovered during the sabbatical period I’ve been having since January: I really love writing, and what’s more I really NEED writing. I need my head to be always writing its ideas; it leads to more and better ideas and more and better writing!
And then the deepest part: I need my heart to be always writing its own truth to itself.
Not going to lie, it felt amazing. My professional work and my own experience have taught me so much about the benefits of daily writing, but I had never been able to put it together quite so well until this March. All the benefits of writing came to me, more powerfully than ever. I noticed the world more. I noticed myself more. I felt more creative. I felt inspired to write other, more difficult things. I felt connected to the other people I was writing with and for. Right up until March 31, come what may! It was wonderful.
And then, the next day, I didn’t write. And I didn’t write the next day, or the next. And today when I opened this document with intention, it still took me two hours of farting around doing other things before I started typing.
What makes habits so hard to form? I have spent years reading, thinking, and even teaching about it (list of my favorites below!). Even in elementary school, I was making charts for myself to tick off. I’ve read the books, used the apps, listened to the podcasts, made the accountability groups. They all help. I’m getting better.
None of them has made me the kind of person who can just do all the things daily.
I made a list of the things I actually do every. single. day. without fail. It’s a short list: 1. Brush teeth 2. Use the bathroom 3. Eat food
That’s about it. Even on workdays, in the job I have held for 16 years… there’s nothing I do every single day. And how I have wanted there to be!
If I could be, I’d be the kind of person who does all kinds of things daily, with routines and habits that are nourishing and consistent and peaceful and intentional. Every day in my imaginary consistent, intentional life, I would practice the piano, do yoga, drink 70 oz. of water, take vitamins, write in my journal, make something, check my budget, meditate, tidy up before bed, floss, read a poem, work on my book, take a walk outside…. obviously I would need more than one day to do all of these daily things, daily. Also, I would be a completely different person.
The more I learn about habits, the better I get at developing them. However, it’s also true that the more I learn about myself, the more I am OK with my inconsistency. I do still want healthy habits, and I do still work on that. Yet I’m more self-compassionate about how hard it is for me, and I’m more realistic about what is truly important enough to do every single day.
On Sunday, I revised my blogging intentions from daily to each Tuesday. I began this post on Monday. I am now finishing it on Wednesday. So much for consistency, but hooray for persistence.
Love me as I am! That’s what I’m working on. ❤️
A few of my favorites on habits (and self-compassion because, for me, they’re partners):