No matter how much I know that birth and death are just expressions of being and that we still are no matter what, that a life’s impact is infinite no matter what, it still hurts when death hits close to home. My friend Aaron Bramley passed last month. He fought hard against cancer, but diseases like this one are powerful. If you want to take a hard look into what living with cancer can be like, read some of his Medium posts. Especially this one on some dos and don’ts of interacting with cancer patients. He was a good person and his bottomless kindness and generosity will inspire me every single day to try to be a better person than I was the day before. And still, I’ll never touch being as good as he always managed to be. We might all have magic within us, but his specific magic was the sainthood stuff. He even died like the transcendent person he was – beginning on an eclipse and ending in a hurricane.
Watching the world lose a good one has a way of shaking you and reminding you that you are still here and you are lucky to be and if you have anything you want to do before it’s your turn to die, you’d better get to it. So it’s no coincidence that I went into a recording studio a few days after Aaron passed and pencilled myself in to finally, after all of these years, begin recording some of my songs. I still don’t know how I’ll afford it – maybe I’ll finally start a Patreon page or a Kickstarter fundraiser or something (and if you feel like you might be interested in supporting me in a way like this, for the love of god, I want to tell you that I’d warmly welcome a comment or message from you expressing encouragement because I’m not too proud to admit I need it) – but I’m going to at least start with starting. It shouldn’t have taken something so horrible to remind me that I’m here and I have some creative stuff to expel from my mind before I’m no longer here, but Aaron, wherever you are: thank you for punching me in the face with some perspective. I guess I needed that.
A few days after Aaron died, I took Ever in to get her blood drawn. We’d scheduled her first appointment for oral immunotherapy (OIT) for her egg allergy for September 21st. A lot of people think a lot of things about OIT, but after reading stories from parents whose children have undergone it online, one thing seems clear: it changes and saves lives. It makes it so that a food allergic child is highly unlikely to experience a life-threatening reaction from something as seemingly innocuous as cross-contamination or even a bite (or more – many of the program’s graduates go on to eat “freely”) of an allergen. I didn’t want to deal with the constant handwringing that would plague me if I sent Ever to preschool or kindergarten – where birthday cakes and cookies that contain egg are always a thing – without utilizing OIT, which is not an option for many people for various reasons, but it was an option for us. So we scheduled it.
But my mind kept skipping back to the skin prick test she’d had in May. She was positive for egg and “a positive is a positive,” but the more I thought about it, the weirder (and more promising) it sort of seemed to me. It took almost the full window of time (15 minutes) for her wheal to show up on her skin and when it did, it wasn’t that big. I compared that in mind with instances in her past where she’d developed hives on her face immediately from simply getting too close to a salt shaker that had gotten too close to eggs. I went in for my own environmental allergen skin prick test in June and the things that I was allergic to hurt. I was uncomfortable in a way I couldn’t imagine my toddler daughter masking, but she hadn’t really complained during her skin prick test. I continued connecting dots. I thought back to the time she’d reacted swiftly and badly to some canned beans that had a cross-contamination warning on the label I hadn’t seen. I contrasted that with the fact that she’s eaten at restaurants and food carts this last 1/2 year that serve eggs here in Portland without even a single hive or stuffy nose coming to our attention.
I knew that statistically most kids who do outgrow egg allergies don’t outgrow this young, but I called the person in charge of OIT and asked if she could order an igE blood test for Ever, anyway. The woman agreed to do it, saying it couldn’t do any harm. She’d only had it done once, two years prior, and her score for egg was over 15. And the reactions we’d seen had been severe, which made it even less likely that she would be a candidate for outgrowth, let alone early outgrowth.
I took her in to get her blood drawn that day and braced myself for the worst case scenario, which is what wound up unfolding: she was not ok with it at all. I had to pin her down on the table with my body while another nurse held her flailing limbs and the phlebotomist tried her hardest to get the needle in. It didn’t work the first time, so we had to start all over again with the other arm. Ever was stuck in a nightmare and I was forcing her to be in it. I wanted to walk out that day and change my mind about the blood test really mattering to me – after all, I was the one who insisted on it, not our allergist, and who wants to see their child in terror? – but I could not shake the feeling that this was incredibly important. Somehow we got through it. We got through the screaming and kicking and we went on to have treats and she remembers the day pretty fondly.
A week later, I got the results. I stared at them on the computer screen for a while before I could even begin processing them. The two egg components tested were showing up as 0.10 and 0.15 – a lot of labs wouldn’t even consider scores that low to be indicative of an allergy. I dug into reading every single forum and study I could find. A drop that huge is really rare. I was immediately hopeful, of course. We even went out to celebrate that night. But I was cautious, too. I found a couple instances of levels dropping that drastically despite the allergy still being present. I found lots of instances of people having a “no allergy” igE score but having anaphylactic reactions when the allergen was ingested in real life. Allergies are nothing if not vague.
Our allergist’s team was still a bit hesitant. They take skin test results more seriously than igE test results, they said. And her recent skin test had been positive, after all. I said I didn’t want to consider OIT anymore without first exploring the possibility that she’d outgrown or was on her way to outgrowth, because for all of its virtues, OIT is an intensive program that requires long-term vigilance. Since the first day of OIT at their office is essentially a food challenge of sorts, we decided to keep our first appointment scheduled as it was: if she was allergic, we’d find out during that first morning in the office filled with rapidly increasing small doses of egg.
We showed up that morning and a different allergist had taken a look at Ever’s crazy igE drop and encouraged the person we were meeting with to instead give Ever a proper oral food challenge, so that’s what we did. And she did not react. She did not react with a little bit of egg and she did not react with a lot of egg. Tears of joy were shed.
That was just over a week ago and we’re still wrapping our heads around no longer being food allergy parents. Just like that, our lives were forever changed. Forever bettered. Just like that, the thing that could take her life away from her in such a cavalier manner was removed from our narrative. I have so many feelings about all of this and I want to write something about the things I’ve learned from parenting a food allergic child – for a lot of reasons, but one being that there sure is a lot of dangerous misinformation out there – but that will be separate from this post. For now, suffice it to say: I will always be an ally to and an advocate for the food allergic. And this Halloween, we will absolutely participate in the #tealpumpkinproject and have non-food items available for children – I hope you’ll consider participating, too.
This last month or so has hit me pretty heavily on these topics … life … death … food allergies. A friend passed, reminding me of other loved ones that have passed, and inspired me to live a better and truer life. Oregon – including trails close to home for us – has burned quite a bit, destroying the life that once flourished where ashes now cover the ground. The thing that was always lurking everywhere that could kill my daughter without notice is something I supposedly don’t have to worry about anymore (I’m still carrying my EpiPens around, though – I’m not that comfortable yet). Every food allergy parent understands – on cruel terms – how fragile life is. It feels so unfair, but I guess the truth is that the universe doesn’t owe us anything. Maybe it’s the other way around: if we’re lucky enough to be alive right now, maybe we owe it to the universe to be grateful for that, to give back, to be good, and to channel the magic from the ether that chooses us as a vessel.
And now for something way less important: a few favorite fall choices from ModCloth conveyed to you via affiliate links.