“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.
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.
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 …
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.
A Connection Unexpected.
Serendipity can make a time of life when everything feels wrong, make sense. I call serendipitous things God Things, though I’ll admit my faith has been tested of late, so I feel a little hypocritical saying that at the moment.
I haven’t been shooting too much lately. I’ve been learning all about the business side of photography, which is good. I’ve also been navigating a very scary and unexpected health change in my daughter, which is not good. But I was glad Camas Life Magazine asked me to photograph Saturday’s Camas Days Grand Parade, because I knew it would inject some normalcy into my spirit.
Just before parade start, I spied a stylin’ couple standing just where I wanted to shoot. Perfect. The rain started, and they opened an umbrella. Score! And then I noticed the Hayao Miyazaki tattoes on her calves. Totoro, no less. We’re major Miyazaki fans in this house. I knew this would be my favorite shot of the day.
I put my worry for my daughter on hold, and really enjoyed shooting the parade, but by its end I was ready to return with my son to our girl, home with a traumatic brain injury (because “concussion” just doesn’t do it justice). As I was leaving, I ran into that couple again, and decided to introduce myself and ask permission to distribute what I knew would be a photo I loved. Turns out they were at the parade with Peter Khalil, candidate for Congress, who very politely asked me to shoot a portrait. At first, what Peter got was the mental car crash that occurred when my urgency to return to my daughter met up with his request, which emerged as all my worry over her, shared sputteringly, with this complete stranger – definitely not my usual MO while I’m working.
I don’t know one thing about Peter Khalil’s politics, but I will tell you that if you ever need to appeal to a person in power for help, you want someone to listen with his depth of compassion. He was so kind, and so humble, and so backed off immediately from his request. So of course I brought him to a better background and shot the portrait.
Here’s the serendipity.
But this was the really cool thing. The Miyazaki-tattoed woman with the flaming hair is named Lyann. Lyann shared that she, too, had a concussion that deeply affected her life. I have found precious few people who truly understand how our lives have been turned upside down by this. Lyann got it. And now I know two people who can illuminate what has taken over my vibrant, crazy active daughter’s life and … turned it off, basically. Put it on indefinite hold. These two people I know – one just met Saturday, remember – are the reason I have a clue what is going on, and that’s not for lack of seeking professional help for her. After all our little family has been through, to find that, right now, is like finding gold.
I shot today’s Camas Days Grand Parade for Camas Life Magazine. Talk about photographing connection; this is one connected community, and you can really see it at events like this. Raindrops started just as the parade did, but the support from the crowd was lovely. I just love this town.
Here are a few of my favorite moments. I apologize these pics don’t click larger; this site is a work in progress. Enjoy, and thanks for stopping by!