This guy, perched in Princess Tree, led me to thoughts of flight yesterday. © Narrow Path Photography
“You begin to realize, as hard as it is to admit, that you have to let some sh*t go …” Eddie S. Glaude Jr., Twitter, this morning.
I just pulled up my Google calendar from March 2019. Color coded and full, it’s like Elspeth’s symptom calendar now. Her symptom calendar – which had no need to exist and therefore did not exist, before her tbi accidents in 2019 – and my Google calendar (essentially blank this week) have officially switched places.
My mother had died on March 1, 2019. Her decline and death were complicated to say the least, but with the help of a friend from church and a busy but stabilizing routine of martial arts, homeschool, kids’ activities and photography business-building activities – plus grief counseling already on the calendar – I was surviving. I was grief-stricken, but I was surviving.
The house felt heavy, though. Our church’s middle school winter camp was coming up. To give Elspeth a break from the grief, I sent her to camp. We were a decade plugged in to Harvest Community Church, up the hill from where we live in Camas, a faith community so loving I’ve tried to coax lonely widow friends across the country to move here for it. We were literally poster children for a church’s role in a widow’s family life – I played church photographer when I could, Elspeth had just joined middle school youth group, just started occasionally singing for Sunday service, was on their treat ministry poster, and – at least today – photographs shot by both the kids and me still grace their web page. I confess, a quiet voice in the back of my mind kept telling me to cherish this time of inclusion, because they don’t last, but typical church-patriarchy issues aside, I dismissed that pesky voice as the remnants of childhood bullying. For the most part, Harvest was home. For the most part, it felt safe.
Note to self, and you: Never dismiss “typical church-patriarchy issues.” Also, if someone has died at a camp your church helped run, look into it, in depth; preferably before your kid gets hurt, instead of after. But, that’s not my story to tell, and anyway, I digress.
Friday, March 15: One time I shouldn’t’a let go. © Narrow Path Photography
Two weeks after Nana died, Aslan and I watched Elspeth ride away from the church parking lot in that school bus. Later, we kept talking about how we couldn’t shake the feeling that we shouldn’t have let her go.
The day of Elspeth’s first tbi accident © Elspeth Feb. The green is the intended innertube path, down a gentle slope and to the snowy field beyond. The red is the path Elspeth’s innertube took when it flipped over that slightly shaded ridge, landing her on her head. The nighttime run was lit only by the campers’ glow sticks.
Elspeth came home that Sunday changed. All of a sudden she was grumpy and tired all the time, with headaches, often-intense neck pain, nausea and dizziness. The first instances of age regression and joint destabilization showed up in the next few weeks. But I wasn’t keeping careful track of Elspeth’s every health nuance yet, and look what we had just been through: Our only other connected family member had just died, after months of agonizing decline. And, all these adults I trusted had shepherded her through that weekend, including a Kaiser ER nurse! The youth group counselor she’d grown to trust most was a chaperone at the camp; she met me as Elspeth gathered her belongings off the bus, told me Elspeth had flipped an innertube the last night of camp, but smiled, “She’s fine.” I can still see it: Her big, toothy smile, hear her voice. “Fine.”
We did what Elspeth has done since her daddy died at home when she was five, back when she would get her brother dressed for daycare so mama could try to keep her day job: We soldiered on, “fine.”
“It was a forced ‘I’m fine’ because I didn’t know what could be wrong,” Elspeth says now.
Elspeth put on a strong face that made it easy to explain away her changed countenance as any-day-now puberty. I took on a photography project for BeLocal East Vancouver, Elspeth and I butted heads when homeschool didn’t go so smoothly, and she largely kept quiet about all the little events she looks back on now and says, “THAT’S why I felt so bad.” Plus, we uncovered a major structural issue in our home that demanded my attention. In June, we went to our usual vacation at Cannon Beach Christian Conference, but Elspeth was too deep in the overload of traumatic brain injury to attend her group activities. She was a little more back to normal by the Harvest Family Camp in late June 2019, but still remembers feeling really scatterbrained then. As we found out after her second traumatic brain injury, she was far from healed.
Elspeth had just decided she wanted to grow up to become a nurse to fund her horse-gentling business. She’d attended horseback riding lessons off and on since age two. The horse girl bug was firmly in my mom, skipped me, and landed hard on Elspeth. We’ve been to a few local barns in search of a Monty Roberts-style; our latest attempt landed us at Short Acres Farm. Short Acres, located in Brush Prairie and owned by Kathryn Tilkin, employed an excellent teacher who was summarily dismissed after Elspeth’s second accident, thrown under the proverbial bus (she’s excellent. She bore zero responsibility for what happened to Elspeth. To keep her out of the fray, I’m not naming her here). Elspeth had been with Short Acres for months. When offered the opportunity to volunteer at Short Acres Kids’ Camp, Elspeth jumped at the chance. From July 8 through July 11, Elspeth formed a strong bond with a part Connemara, part Welsch-Cobb, all obstinate pony named White Lightning. Kindred spirits, they fell in love. White Lightning and Elspeth led younger kids through gentle riding exercises and horsemanship classes all week.
Elspeth at horseback riding lessons March 1, the day her Nana died. © Narrow Path Photography
Camp volunteers were gifted with free riding time in exchange for their work at the camp. On the last day, Elspeth was getting set to ride White Lightning, but was having trouble fitting his bit into his mouth. She asked for help from an older camp leader we’ll call Wren. Wren stood between Elspeth and White Lighting, so that Elspeth could not see what she was doing; she fiddled with the tack, and then told Elspeth, “You’re good to go!” and walked off, not looking back.
Elspeth took that as a green light to mount White Lightning – as literally any sane person who spoke the same language would do. But White Lightning’s long mane hid the fact that Wren did not fasten his chin strap. Wren had guided Elspeth to mount an improperly tacked horse. Very quickly Elspeth found herself on the back of an improperly tacked and spooked horse with a chain slapping against his face. Elspeth pulled on reins that weren’t communicating to him, trying to figure out a safe way to emergency dismount before she found herself bucked and landed on the right side of her helmeted head, sliding on her right shoulder to a stop.
“Is she unconscious?” she remembers hearing. Short Acres’ barn was full of parents of volunteers and campers, and Elspeth’s teacher. Elspeth saw Kathryn – who did not witness her fall or the event that preceded it – walk into the arena from the barn, surprise on her face, as Elspeth was getting up from the ground. Kathryn walked towards her.
“Did your mom see that?” Kathryn asked. Elspeth shook her head. “No? Good.”
Kathryn asked her a few questions, looked in her eyes – not reliable checks for concussion, folks – and put Elspeth back on White Lightning to ride for an hour.
I started to think something was wrong that night. The next morning, Elspeth was walking into walls. She walked into the bathroom and didn’t recognize it. I hopped online, quickly realized she had a concussion, and initiated a quiet, dark house recovery protocol. Meanwhile, I reached out to Kathryn. We met at Short Acres on July 30. “I kept warning Elspeth to slow down,” she said – that day, when Kathryn wasn’t even in the arena? Earlier that week? Either way, that was a sharp contradiction from her previous take on Elspeth’s volunteer work that week:
Messenger chat with Kathryn Tilkin, before we met in person, and before I knew how injured Elspeth really was.
I told Kathryn about our mounting medical bills. She asked if I wanted her to come by with groceries. At that point I sat back and pretty much let her talk, as I could tell she was in thinly-veiled panic mode. If only she’d known just how hard she would be to hold accountable!
As we sat and talked, Kathryn pointed out teen riders who were at her barn at the time. “She just got a concussion,” she said about one, like it was nothing. Truly, she rattled off her concussion knowledge as a list of folks she knows who’ve had them – herself, her husband, her riders – and sounded like she considered them a rite of passage. Between what we’ve both endured as mamas and my pre-LongCovid martial arts stand on bruises, under different circumstances, we might have been friends.
But then, I would never interview an entire barn full of witnesses to fuel my counterstory; fire an innocent, uninvolved party; and trash-talk a then-12 year old to shield myself from accountability, so … maybe not.
“This farm is my baby,” she said at one point, tearfully. We parted ways after about an hour; she cut off communication when I asked her for her facility’s insurance company contact information. It’s still on my list to call every company I can find until I find the one that insures Short Acres – if they even have insurance. Wren was a kid. She might have been a jealous kid, might have been a momentarily unscrupulous kid, or maybe she was just a momentarily lazy kid. But Wren was a kid. Kathryn was the adult, the captain of the ship. Putting Elspeth back on that horse without so much as a phone call to me was criminally negligent, and may well have been the most damaging part of Elspeth’s two tbi injuries.
In the process of discovering Elspeth had suffered a serious concussion on July 11, we discovered (of course) she had suffered a serious concussion on March 16. That’s when Elspeth and I sat down and recounted the events of March 16 after her innertube flip, but before she arrived home: The pain, the disorientation, the nausea, repeatedly being told she was “fine.”
Immediately I reached out to Harvest Community Church, sure they would want to know what had happened, and update their concussion protocol accordingly. I sent an email and copied every leader of any kind, male and female – even the church secretary – to make sure accountability would happen. Because that’s what you do, right? I mean, what is youth camp about if not doing right by the kids? Right? I was met with a resounding, deafening silence. One elder said he’d reach out to their insurance company. The youth pastor sent one email saying they’d look at their concussion protocol. Two weeks later, when one of the youth leaders called to invite Elspeth to a movie night (she was still lying in a dark room, and would be for weeks), I asked her if she’d been told what Elspeth was going through, and why. Nope. No idea.
If that youth group had been my ship, I would have met with my staff immediately, trained myself and my staff on concussion immediately, and reassured the injured family with my actions and my words. I cannot imagine making a living shepherding kids to Christ, yet being so cavalier when my action or inaction (or both) caused grave harm to one of them.
Elspeth couldn’t go to church any more, even if she’d wanted to. One of her lifelong best friends, the pastor’s daughter, didn’t call. That next year was the first in recent memory that Elspeth wasn’t invited to her birthday party. The pastor did call eventually, wondering why we hadn’t been to church in, by then, months. I told him what I would have done if that church and that camp were my ship, and what happened to Elspeth had happened on my watch. I told him I didn’t think Harvest reacted with transparency and accountability, and I didn’t know how to reconcile that.
“I guess you know what you need, then,” he said. I didn’t need Covid19 or the siege of the Capitol to show me American evangelical Christianity isn’t into accountability. I learned it from Harvest Community Church.
We descended into what has been two years of hell. First, we struggled to find providers who at least knew the magnitude of what we were dealing with, if not what exactly “it” was. That easily breezed through the church’s insurance company’s year of no-fault insurance medical cost payments; good traumatic brain injury therapy is not easy to find. Then, the struggle was to figure out why tbi therapy wasn’t doing the trick for Elspeth. That journey is a long tale that has been shared on Facebook’s complex-patient medical groups. In a photo, it looks like this:
Elspeth walked that folder full of provider visits enduring that calendar of symptoms to get to that CD of images.
Elspeth has two serious traumatic brain injuries. We figured that out pretty fast after July 11. But Elspeth also has this:
Her second tbi fall was so dramatic, the ensuing hour back on the horse after the fall so surely damaging, that I long focused on that second tbi as the most injurious. Only after months of symptom tracking and research did I realize the signs of deepest damage started showing up just after her first injury.
I’ve been waiting three months for the doctor who finally, finally found this to give me a writeup I can use for insurance claims and (heaven forbid I actually find one) lawyers. I’m still waiting. To his credit, he’s busy helping lots of people, and has had his own Covid19 Year from Hell. But, long story short, Elspeth has a slipped disc on the right side of her jaw, causing her jaw to press into her auriculotemporal nerve – and, I strongly suspect, causing her dysautonomia and postural orthostatic tachycardia syndrome; disrupting her cerebrospinal fluid flow and, possibly, more.
Honestly, though, while I wouldn’t be writing this blog post if that weren’t true, it’s not the point of this post. The point of this post is to try and offload this burden I’m carrying, the dismay at just how deplorably people behave when their ass is on the line; and how hard it is to pursue accountability when clear negligence has harmed your child.
Don’t stress about those release forms, mama of an injured child, seeking justice: A good lawyer can get around those. The crux of your battle is this: The courts are 25 years into building a legal system that protects the insurance companies. One lawyer took the time to explain this to me (before he stopped taking my calls or emails, as they literally all do, to a one). Apparently we have an excellent case to at least earn a decent settlement from an insurance company (which would mean the world to us), but with the state of the legal system today, and the way court justices are stacked for the insurance industry, winning a case would be a lot of work. In spite of clear applicability of the Lystedt Law in Kathryn’s putting Elspeth back on that horse; in spite of the sheer stupidity of sending kids down an icy run on an innertube, sans helmets, in pitch black lit only with glow sticks; and the blatant lack of knowledge of basic concussion protocol demonstrated by Harvest Church camp’s on-staff (emergency-room employed!) nurse, our case is somehow … too much work? Not cost-effective? I have heard a myriad of reasons from more lawyers than I’ve ever thought I’d talk to why our case is not ideal. I have not heard one good reason why our legal system has nothing for Elspeth. It boggles my mind.
So, we’re on our own.
Growing up, I was taught that when you do something wrong, you fix it; you make it right. Not everyone in my family of origin learned that same lesson, but I did. Once again, it’s time to embrace the fact that this country, this legal system and my world simply don’t work that way. I have been completely consumed with researching the deeper causes and solutions of Elspeth’s injuries, caring for Elspeth, and trying to homeschool her as she is able, as well as homeschool her brother, since July of 2019. I’ll be blogging on the ways we’ve found joy in this time, and the hacks I’ve found that might help someone reading this. I’ll be blogging on revelations on American evangelical Christianity and humanity that have come to me through this process. I’ll definitely be blogging about our journey with Dr. Anthony B. Sims, who has given Elspeth healing and given us hope. And I’ll be searching for a way to provide for my family, yet still be home with Elspeth for as long as she needs – which is still the foreseeable future.
Meanwhile, searching for a lawyer on top of it all has been time-consuming enough that I feel like I should be teaching a college course on the subject, or at the very least earning a part-time wage. There are still a few names on my list to call. And if The Right Lawyer is out there and reading this, call me. But as an urgent, front-and-center issue, I have to put it down. I have to let it go.
No more making nice and keeping quiet, Harvest Community Church and Kathryn Tilkin of Short Acres Farm. Elspeth deserves so much better. She gave you her best. You were negligent. You did wrong.
I name you.
Friday was a hard day. I’m at the crossroads of my life as a single mama and the parenting techniques of my mother and father. The sibling relationships they fostered in their kids came to an end that has me asking once again, “Why did they bother to have kids?” Concurrently, I’ve come to realize something has crept into my own home I worked hard to keep out: Entitlement.
Most of Friday saw me in a stupor. It was the end of a workweek for 9-to-5ers, and lawyers. It was also the end of the line in my two-year battle to apply some semblance of accountability in the administration of my late mother’s trust, having failed at the same in the administration of her care. I sat. I stared. I cried a little, but mostly I turned my mental gears furiously, knowing I was stuck – but also (finally, I’m only 49!) knowing I probably possessed the tools to get unstuck, now. When I remembered that, I stopped despairing, those gears gained traction and I started remembering.
I really love this broken-dresser-turned garden bench I didn’t even realize I needed.
I grew up in 1970s Medina, Washington, USA; middle child of a pilot turned reluctant (but successful) insurance salesman and a mother whose Pollyanna attitude I watched with admiration, because it bordered on heroic. We covered up Mom’s childhood abuse (and something about Dad I never found out) with a way-upper-middle-class life fueled by alcohol and credit cards. My favorite family outings were forays out to dinner in Seattle. We’d go to high-end restaurants with high ceilings (like The Captain’s Table, if memory serves; I can almost hear Dad say the name, but I can definitely picture the sailors’ flags hanging from that ceiling). I remember getting ready, Mom always taking her time to choose her jewelry, sometimes helping me with mine. After the requisite formal dress, I could just sit there and eat good food and just … think. I remember those times wistfully as lonely, but with affection for the person I was becoming. I look back and see the person who is holding me up now: Me.
Those childhood dinners have been an object lesson for my kids (now 11 and 14) for a while now. My sister was nine years my senior. She might as well have lived on another planet – and been a more advanced life form, for her part in our relationship. She always ordered a foo-foo drink like a strawberry daiquiri, so let’s call her Daiquiri. At some point, as I grew, I started to notice our shopping trips, holidays, vacations and dinners out were always paid for by credit card, and watching Dad peruse the bill felt … tense. So I started to order Caesar salad and clam chowder, just about every time we went out for dinner. Call me Soup’n’Salad. My little brother, now … he ordered the top-dollar Alaska King crab legs, so let’s definitely call him Alaska King. Almost every time he ordered he’d intone, “Is that okay?” in that, “I know you’re going to say yes because you always say yes to me but I’m still going to ask to ‘show I care.'” Entitled. My mom didn’t want to see it, so she just … didn’t.
My mother’s childhood desk displays a pair of her garden gloves, a bottle of her Bal de Versailles, and two “Bon Vivante’s” drink recipe guides from the late 1920s. That author also penned books on religion and on the mafia. Alcohol, religion and crime go so well together.
Mom may not have seen it, but I sure did. In all things, I asked permission first, like I thought I should. Frequently, I was denied, especially as a teenager (Mom and Dad were pretty overprotective). Alaska King, on the other hand, operated squarely in Act First, Apologize Later territory, as he does to this day. As for Daiquiri, I’m just not sure (other planet and all), but she always struck me as quintessentially unemotional. It’s served her well in practical life decisions that have her set up very comfortably. I’ve got to give her kudos for that. I wish I could go back a couple of decades and apply some good unemotional thinking to my future planning. I don’t think she learned that from my parents, who were expert-level emotional money managers.
Dad was a top salesman in his insurance company. Dad was also in the first white-collar generation to experience ageism. Bullied and belittled, he ended up prematurely retired and profoundly unhappy about it. He sat a lot; Mom and Dad comfort-spent a lot; and the comfortable lifestyle he worked for decades to secure dwindled down to little more than a half-million dollar home and property on a pond in Ridgefield, Washington; and Mom’s estate jewelry, collected over decades in 70s and 80s Seattle, then 90s Miami. In 2009, he died, without a will (though lately, I’ve come to wonder about that), and Alaska King set his sights on home ownership: Mom’s home ownership.
Of course, it fell to middle-child me to name the elephant in the room, trying to critically analyze whether my mom’s failing health would necessitate using her home to pay for future care. Alaska King didn’t allow any discussion of this possibility, and anyone who tried to push it was Out of the Discussion, be they Mom’s (now late) sister, her brother, or me. Well. He removed Mom’s siblings from the discussion; I removed myself after repeated physical threats. Why did Mom choose this person as her caregiver? See my last blog post; it’s a trauma thing.
Friday I realized that in the last year of her life, when dementia was having a heyday with my mother, she sat in a room while her well-to-do Daiquiri daughter and her nearly-half-million-dollar-homeowner-to-be Alaska King son figured out how to keep the estate jewelry out of the hands of Soup’n’Salad – who had already been named the beneficiary of the jewelry, by the way, in 2014. My husband had died suddenly in 2012. His lifelong employer, the USPS, botched his life insurance paperwork, leaving me without the life insurance or a financial safety net (https://www.facebook.com/USPS-Widows-134024703443502). Meanwhile, every time I saw her in person that last year (unless she was in the hospital, where her care landed her repeatedly; I had reported Alaska King to Adult Protective Services, and was no longer welcome in the home) she tried to show me her jewelry. And I said, “Mom, I don’t want to shop your house,” took her to her favorite chair, and gave her a backrub. Alaska King had no such compunction, having already secured the gold ropes that remind me of the velvet crowd guides used by the Ringling Brothers and Barnum and Bailey Circus we attended more than once as kids.
Amusingly, it also took me until Friday to actually realize Daiquiri’s part in this. She just doesn’t come to mind a lot, being a higher life form and all. But seriously, I cannot for the life of me imagine having a husband, two properties, and ample care for all my needs; yet furiously jockeying to make sure my widowed single sister doesn’t get her hands on something she might need to sell to feed her family. Long ago, Mom had gifted “The Opals” to Daiquiri (what “nominal” jewelry collection includes a whole segment commonly known by the family as “The Opals?”). My daughter never told me something she told me this day, too: When she was very young, maybe six, she overheard Daiquiri whisper to her kids not to play with mine. What was Daiquiri worried they were they going to catch? Authenticity? Integrity? Very dangerous, those. Stay back, kids.
There is an upside to our little sibling disparities: It was a prelude to a fuller widowhood. I learned to be grateful for what I have – sometimes kicking and screaming a bit, but overall, grateful. It was a crazy amount of work to inherit the garage sale that should have transpired on Mom’s property, transporting the bulk of Mom’s home contents from a storage unit in Ridgefield to our home in Camas. But there were treasures I know Mom loved in there, and with a little shift in attitude, I could embrace them as my treasures.
Mom loved her coffee. These were probably her coffee grounds.
One more Friday realization (it was a big day): I realized what passes for elder care law is big business. Mom told me over and over, through the years, how stressed she was to have to repeatedly go visit her lawyer, be grilled, think straight. She felt … forced; she told me so, repeatedly. And she lamented what came to an $8000 legal bill at her last account to me. That effort wasn’t driven by her. This was a reputed premier elder-care lawyer in southwest Washington, too – the one I’m told teaches all the other elder-care lawyers “how it’s done.” This woman oversaw the influencing of my mom to distribute her assets as my brother saw fit.
Friday, I realized my attempt to find a lawyer to stand up to Alaska King is at an end. This blog post is my substitute, and my comfort as I confront the entitlement in my own home now. Mom didn’t want to face the entitlement in her children; that was her undoing. I won’t ignore it; I know where it goes, how it ends.
Contesting Mom’s trust was never about the stuff. It was about standing up to Alaska King. Daiquiri doesn’t get much mention around here, but Alaska King? He’s known, not least as a role model for what not to do. He’s got a few names around here.
I think the name that sticks from here on out will be Alaska King.
Author’s note: Solid grief counseling was instrumental to me in this time. I’m not sure I could have even attempted to stand up for myself in this situation without it. Grief Recovery Method counseling with Colleen Storey worked wonderfully for me: https://www.psychologytoday.com/us/therapists/colleen-storey-vancouver-wa/765063. We met Colleen at Peace Health’s Stepping Stones family loss counseling program after the loss of my kids’ Da. Stepping Stones runs counseling and camps for families coping with loss. So many big-hearted volunteers worked with us; Colleen impressed me by being able to take the horned side of the beast of widowhood, as well as the tearful side. My mother was my person. After her loss, Colleen’s GRM counseling was there for me. I can honestly say the work she led me to do held me up then, and holds me up still. Learn more about Grief Recovery Method here: https://www.griefrecoverymethod.com.
I didn’t anticipate using this photograph to draw attention to a medical fundraiser, that is for sure. The link below explains our last two years.
“If I’ve gotten myself into a mess, come and save me,” she would say, when I drove her to physical therapy for debilitating back pain that was keeping her awake at night, or took her out to plant nurseries after she hadn’t seen anyone for days.
“By the time you need saving, it will be too late,” I would answer. I would always ask her to come live with me. For years, I asked her to come live with me, with us. She would always say, “But where will I put my stuff?” She was a lifelong collector of antiques and collectibles; I could take her, but I couldn’t take all her “stuff.” We live in a two bedroom, one bathroom house, up the hill in Camas, but just downhill from where the houses get big. I would have gladly slept on the living room couch, but we just didn’t have the room for another house of furniture.
The day before my mother died, I had this crazy strong instinct to put on her black ’60s LeRoy Knitwear sweater with the fringed sleeves. I cooked roast pork for dinner, just like she did the night Dad died almost ten years earlier. And the kids and I ran errands and moved through our day somberly, saying to each other, “What if she dies tonite?”
My relationship with my mother was the culmination of many years of very hard work. Molested at age 7, my mom never recovered. It took me years to uncover the reason for her fearful outlook on life. It took years to earn her trust enough for her to tell me the stories of that time. It was the stable hand. He was nice about it, you see. That made it okay. If you were nice about it, it was okay. Wasn’t it? Her dad and his mistress seemed to think so, when they shared a wink about it in front of her.
After she died, I found out that behind my back, she told people I was born with the umbilical cord wrapped around my neck. I guess she said that often – though, wisely, not to my face after that one time I exclaimed, “Yes … and I’m FINE!” That was her excuse for me, her reason for me when others didn’t like something I did or said, “You can’t throw a baseball with a broken arm,” she’d reason. Along with all that work on my relationship with my mom came a lot of good work on myself. I found out the hard way: Healthy boundaries were not welcome in my family.
I was so angry at first, when I heard that. It’s taken a long time for me to realize: She said what she had to, to whoever she was talking to, to keep the peace … to make everything “okay.” I’m sure she learned that at an early age … maybe age 7.
Later that evening, I found a voice mail on my old phone, the one that didn’t have voice mail set up at all, so how could I have a voice mail waiting there? But I did. It was Nana, calling for help, 11 times, over and over. I could tell that she couldn’t breathe. I called her caregiver immediately, who responded to my grave concern at this desperate voicemail from my mother – who clearly was gasping for breath, and could not find her way back to her oxygen – with an incredulous, “What are you trying to say?”
I just stared at the phone. How does that answer even come to mind at a time like this? Does not compute.
I called the police, and the officer who returned my call didn’t seem impressed with the news that had landed him on the other end of my phone, so I detailed years of recorded neglect and injury, a year landing in hospital repeatedly, trash piles blocking the way of this woman who had to use a walker (why I bothered with that if the other didn’t impress I do not know), and finally resorted to recounting the porn photography her caregiver shot in and around her home, without her permission. The officer took a detour to share how difficult it is to care for the elderly and, by the way, filming porn between consenting adults is perfectly legal. And anyway, what exactly do you mean, “Porn?” Maybe he wanted to see it for himself, see if it really qualified. “Good quality? Poor quality?” I imagined him wondering. Ridgefield’s finest, ladies and gentlemen. I didn’t share this photographer’s reputation, in the artistic-muff-shot world, for being very respectful … for being very nice about it.
After arguing the finer points of artistic muff shots of young women (who post publicly on Facebook that they just lost their day job “again”), I called the Adult Protective Services investigator who had been assigned to Nana’s case – who had never reported back to me what she found or what had been done on my mom’s behalf – and left a voice mail. To their credit, though, after I called APS, the piles of trash and recycling that blocked Mom’s way to comfortably navigate from living room to kitchen did disappear. So there’s that.
Mom always told me, “I’m okay.” When I could hear her starting to lose herself, several years back, when they went to Europe for 10 days and she was afraid to be alone: “I’m okay.” When she was struggling to cook breakfast for herself at noon, the broken refrigerator door falling open and almost knocking her over: “I’m okay.” When they rented a van to try and take her out with extended family, dropped her on the van step so that she skinned both her neuropathic shins, which wouldn’t heal for months: “I’m okay.” When her legs just spontaneously started bleeding all over her white kitchen floor in her last months: “I’m okay.” When she landed in the hospital because no one noticed she’d stopped eating; or again, after she’d been stuck on the toilet, with diarrhea and vomiting, all night, the bathroom window open to the winter night: “I’m okay.” She actually was okay, in the hospital, even though she was careful not to show it in her caregiver’s company. She knew she was being taken care of, there.
Earlier, Mom had left a voice mail in which she was obviously very much on morphine. She was waiting in a “mess of her own making,” and wanted to know if I still loved her, even though … that. She was waiting for them to come clean her up. “They’re taking care of me,” she slurred. I seriously wonder how long my uber-proper mother of high-society, heavily English upbringing waited in that state before she picked up her phone, dialed my number and left me a voice mail.
Of course I always knew, part of me always knew, but that was when all of me really knew, and I broke down crying: She was never okay.
Short weeks before, she had been back in the hospital again. I walked in to her room to see her deep in thought. She said she was contemplating how many cigarettes she’d had recently, trying to count them in her mind.
“If I’ve gotten myself into a mess, save me,” she said then.
“You can sleep in my bed,” I told her.
“But … I can’t leave my stuff,” she said.
The next morning, I found more voicemails, this time from a briefly repentant, very tearful caregiver. And I left one more for APS.
“Nevermind,” I told her. “She’s dead.”
First, an introduction to The Widows’ Guide to Living Well
I’ve learned a lot as a widowed mama. Someday, when my kids are a little older, all the God Things that got us through will go into a book. For now, a number of stories are clambering to come out – stories I share because I think they could help someone else. They’ve been collecting in my mind in chapters under the title, “The Widows’ Guide to Living Well.” This is a new story, but it’s definitely clambering.
My introduction to concussion
When Walter died, I was completely overwhelmed by the constant need to be “on” as a newly single mama of a then-two- and five-year-old. I couldn’t have sustained that level of Mama Bear if I’d tried; my circuits would have burned out. But even just two months ago, a friend said about me, “She keeps her chicks close under her wing,” and I do. My eaglets, as their Da and I called them, are 9 and 12 now, and I’ve endeavored to encourage them to fly as healthily as I know how – and push myself to do it better. So when I signed Elspeth up for her first middle school camp this spring, at a church I’ve long looked forward to shepherding my kids at just this age – that I have adored, so it will remain unnamed – I thought I was doing right.
Youth ministry is a funny thing. I remember feeling amusedly skeptical, from my years in Catholic school in Miami, that apparently I’d grow closer to God if I got little sleep and did kinda dangerous – but not too dangerous – things. Oh, and got really loud. I didn’t subscribe to it then, and Elspeth doesn’t subscribe to it now, but she went along for the ride, and the ride was pretty good – until an inner tube flipped and she hit her head on the ground the next-to-last day of camp. Elspeth went to the nurse on staff at the camp, who is actually an emergency room nurse. He checked her eyes, asked her a few questions, then told her she didn’t have a concussion, but to let him know if she felt nauseated. She let him know she felt nauseated. And … he just told her to rest.
If there is even a chance your child has suffered a concussion, and she is not with you, the very first thing folks with her should do is call you. This is not overreacting. This is common sense.
One of the big misconceptions about concussion is that it shows up right away in diagnosable symptoms. Sometimes it does. In this case it did, but those around Elspeth didn’t know what those symptoms meant. After she told her camp nurse she was nauseous, and he told her to rest, she told her camp counselor. She told her to rest. The next day, she was dizzy, nauseated and super foggy. She told another counselor. That counselor told her to drink some water. Nobody but nobody told her, or me, that she might have a concussion. Only one of the adults involved sought me out when I picked up Elspeth from camp, and she told me she was “fine.”
People with concussions can look fine, and very much not be fine
That’s worth putting in bold.
Now picture that you are a single mama, and you know damn well you sometimes tend to overreact, and a small group of adults you trust, including an ER nurse, for goodness’ sake, all tell you your child is fine. I saw a prepubescent girl who was super tired, pretty irritable, still battling nausea from gut issues we’d only recently resolved surrounding the trauma of losing her daddy young, kinda sensitive to sound, like she’d always been – all issues that masked concussion symptoms perfectly; and I saw the opinion of all these people I trusted; and I completely missed that my girl had a concussion.
Elspeth’s pediatrician confirmed the incident in March was indeed a concussion just this last Thursday. All we had to say was “nausea,” and that alone clinched it for her. Don’t everyone sigh in disgust at me now; I can handle that all by myself. I feel beyond terrible that I didn’t just quadruple check for myself.
Concussion numero dos
I miss homeschooling my kiddos in Spanish, which they love almost more than any other subject. But, I digress.
On July 11, Elspeth was bucked from a horse. Suffice to say I was practicing healthy letting go, at a place I thought I’d adequately checked out, and I did not witness this fall. Here’s the thing: The person in charge of Elspeth – and all the other youth there that day – checked Elspeth’s eyes, asked her a few questions … then helped her back up on that horse. Elspeth rode for another hour.
Turns out that was a very bad idea.
I say again: If there is even a chance your child has suffered a concussion, and she is not with you, the very first thing folks with her should do is call you. This is not overreacting. This is common sense.
That night, Elspeth had a headache and some nausea. The next morning, Elspeth was having trouble not running into walls, her head hurt, she was nauseous, she was sensitive to light and sound. I researched concussion, of course determined that’s what it was, and commenced dark-room therapy. She spent most of the next week lying in our dark living room, listening to Harry Potter audiobooks on our computer. On her pediatrician’s advice, I took her to the ER, just to make sure she’s okay (sure that they’re overreacting, because in spite of the primers from my boy’s soccer team, I, too, know zilch about concussions), and as we’re led straight past the waiting room, up the stairs, and into the short stay rooms, I’m the one trying not to cry. Well. Turns out Elspeth did indeed have a concussion, and not a mild one. But I was doing everything right, gold star for me – just keep doing what we’re doing, the ER doc told me, and as soon as her symptoms are clear for 24 hours, she could slowly go back to normal life.
Turns out that was bad advice.
Two days later, we took Elspeth to an afternoon party, with strict instructions to stay calm and stay safe, and she did – but also lost count of how many cotton candies she ate. Do you know what sugar does to a serious concussion? Let me paint the picture for you. The next morning, just after breakfast, Elspeth was stuck on the toilet with nausea, and diarrhea, and turning pale, and then she couldn’t hold herself up, and she was lying down on the floor, and she had blue and white stars in front of her eyes and her hearing sounded like she was underwater; that’s what sugar does to a serious concussion. It was like her power plug was pulled out. Half an hour later we carried her into the ER at Legacy Salmon Creek. Ironically, this time they did have us wait in the lobby, but not before they called an ER doc in real quick to ask her a few questions to try and determine if she needed help right that second, or in a few minutes. A few minutes it was, but they did a CT scan this time. Thankfully, no bleeding could be seen on the scan, and we were cleared, once again, to keep doing what we were doing and, as her symptoms allowed her, slowly go back to normal life.
Turns out that was bad advice, too! Just later that day, we found out mild dehydration can cause that “plug-pulled” effect, too.
This is where Elspeth spent most of her July. August is shaping up pretty similarly.
By July 22, we’d determined that Elspeth can safely listen to audiobooks in the dark; hold baby chicks; and sew. She can do one-process activities. She could not read for any length of time, or run, or hold a normal conversation. She could not put away her leftovers after dinner. Heck, this girl couldn’t choose her own clothes in the morning, or at bedtime. She wouldn’t let me choose her outfits when she was two, not even then! We were seeing a pattern: brain overload led to headache and nausea. If the overload didn’t immediately abate, age regression and vicious circular thinking set in. And if the overload didn’t quit, we hit full-on two-year-old tantrum. I actually thought about recording it the first time it happened, just because no one would have believed it.
I did what I’ve always done when medical professionals hadn’t provided us with answers: I went to Natural Grocers on 192nd, and talked to Jenn Reznick. Jenn started us on turmeric, citicoline CDP choline and omega-3.
Amazingly, Elspeth takes all of these without complaint. Amazingly.
In the days that followed we saw an amazing neurofeedback provider who had helped another TBI survivor we know immensely, but who I can not at this time possibly hope to afford; we went to several physical therapists who were “concussion specialists,” who pushed Elspeth to symptom trigger … then waited a few minutes … then pushed her again, telling us this was the path to healing; I’ve recorded more strange symptoms than I would have believed if I hadn’t seen them – way more than I have listed here, so if you’re wondering, and it would help you to know, please ask; and I slowly became more and more terrified that the Elspeth we knew was gone for good.
And then we met Dr. Webb
Dr. Charles W. Webb, DO, is at Legacy Medical Group – Orthopedic and Sports Medicine. Legacy’s ER actually referred us to him originally, but also to another doctor who was specifically pediatric – and booked out for weeks; and after our local PT experience, I felt like giving up on Western medicine. After all, look at all the misinformation that got us to this point.
Turns out that was my mistake.
Fortunately, I took to the phone, asking hard questions that did indeed lead me to folks who know (and believe!) what we’re dealing with, and they led us to Dr. Webb. He debunked all the wrong advice we’d been given thus far; added a gaggle of supplements; set us up with ongoing therapy colleagues back at Legacy Salmon Creek; and both scared the hell out of me, and heartened me. He told me kids usually recover – 80 percent, I think he said – from a concussion in two weeks. Maybe he said three, I don’t remember for sure. Well, Elspeth likely still wasn’t healed from her first concussion when she got this, her second. Ninety percent recover in six weeks. The rest can take months, years … or never recover completely at all. The key, he said, is to really and truly let her brain rest: Sunglasses, hat and earplugs, indoors too, at all times; twenty-minute brain rests every hour; no more than 20 minutes’ screen time per hour. Don’t trigger symptoms: Triggered symptoms are a step BACK.
We saw Dr. Webb yesterday. Yesterday! We put all his advice to work, right away. And today …
We were a little wiggly on this particular brain rest period …
Elspeth in her element.
Lord, this isn’t what I meant.
I have prayed many times in my widowhood for God to make me the patient mama my kids deserve. Funny how things like that come about. My daughter has gone too long unheard, on too many fronts. I hear you now, love.
Anyone who tries to tell you or your child that repeat concussion is an automatic cost of living life to the fullest, to be accepted and weathered like a common bruise – whether your kiddo is a horse girl or a teen searching for answers at church camp – is either trying to sell you something, or tragically just doesn’t know how misleading (and misled) they really are.
Yesterday Dr. Webb looked at our girl and told her we are going to get her back to the life she loves. And today we took a giant leap in that direction. AND today is the first day in so many I’ve lost count that Elspeth has not had one bout of tears. Well. She started when I was closing the door after stuffing her into bed, but I told her no, don’t mess with my record of no tears today, and let me write this post, it’s important. And she stopped.
Thank you, Lord. Thank you, Dr. Webb. And thank you, so much, Rebecca, Katherine and Debbie. You kept me sane and gave me guidance and hope when I was scared half out of my wits.
I was contemplating writing this post tonite, when by some strange coincidence, I met someone who studied under a martial artist I’ve long admired who is no longer with us on this earth. This gentleman found me through an old tbi (traumatic brain injury) tag on an Instagram post I made about someone else long ago. Strangely coincidentally, he told me his tbi was caused by multiple concussions that were not taken seriously enough. Off to bed the kids went, and off to write went I.
If you or someone you love live anywhere near the Vancouver/Portland metro area and are having trouble getting help for your concussion symptoms, get in line to see this guy:
If you want to improve your health, solve a tough health problem or simply save money on medical bills in general, get in line to see this gal:
Here’s the concussion education site Dr. Webb directed us to:
P.S. as of 12/08/2020: This was a long time ago now. I wasn’t as far along in this journey as I am now. Read on before you follow any of the referrals above.
Further update as of 3/28/2021: Yeah, reach out to me before you follow those referrals. I’m leaving this post up for the record, but we had to dig much much deeper for answers. Don’t settle for anyone who runs of out tools in his toolkit and just declares you “healed,” or responds to the end of her toolkit with toxic positivity. Again, if you’re struggling with tbi or related injuries, reach out and I’ll be glad to share my resources.