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.
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.