The sh*t I have to let go.

The sh*t I have to let go.

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.

Musings on a crossroads, and entitlement.

Musings on a crossroads, and entitlement.

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.

 

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