Jaxon and Kirsten "Hard Does Not Mean Unstoppable"
PHOTOGRAPHY BY RANDY BACON
I usually try not to think about food allergies (milk, nuts, and fish for me) all that often, and considering that they’ve been part of my life forever, I usually don’t have to. I mean sure, it dominates the reptilian survival part of the brain as a necessity, and reading ingredients and checking for cross contamination has become as natural as breathing, but I rarely need to spend my free time pondering it. And that is a blessing, because pondering can get depressing disturbingly fast. Truth be told, if it weren’t for the good my story might do for someone with food allergies, I wouldn’t be writing it, if only because it causes me to reconsider my entire life and all. That being said, here we are, so I might as well try to teach whoever’s reading this a little about living life with anaphylaxis.
It’d be good to start with the big one: school. I go to Nixa Public School, and even though they do a phenomenal job, it was still dangerous. Obviously, elementary school lunch can be messy, and when there’s food allergies, spilled milk is actually something to cry over. In addition, public school has this obsession with pizza parties and other food-related celebrations, and while I enjoy parties as much as the next guy, it can be like walking through a minefield for fun when allergies are added in. My seventh grade year had one of these pizza parties, and it ended when my chest and face had turned completely red with hives. I didn’t even eat anything, I just touched a dodgeball that someone else with cheese on their hands had touched earlier. While these problems can be daunting (believe me, I know), they’re not impossible to beat. The keys are trust and information. As much as it might make you feel isolated or awkward, it is 100% required that you tell your teacher and at least a couple of friends. People can’t help if they don’t know what’s going on. Trust is vital too, because a group of friends who can both understand what you’re going through and help you go through it is worth more than gold.
When it comes to restaurants, memorize the phrase “cross-contamination.” Also get used to making special orders, because you’re gonna be making a lot of them. A very common mistake that both parents and allergy victims make is giving up without even trying, restaurant-wise. The basic assumption is that you can’t eat anywhere, but that’s not true at all. For example, I can eat at a pizza place, and I’m allergic to cheese. That is insane. In fact, there are a surprising amount of places around Southwest Missouri that I can eat, even with the burden of a milk allergy. As before, the key is to inform. Most people have this misconception that food allergies are like seasonal allergies, and therefore won’t take them as seriously. You need to tell them the truth, exaggerate even. When you do that, you’d be surprised at the length that the good folks who work at these establishments will go to keep you safe (either out of the good of their hearts or for fear of lawsuits, depending on your outlook of life). To make a short paragraph even shorter, don’t give up on restaurants. They might surprise you.
This paragraph is where my story differs from most others. Up until now, I’ve been trying to teach people how to live with food allergies from a practical standpoint while telling stories from my own life. This paragraph, though, is going to tell a much darker, much more recent story. When my mom asked me to write this, I procrastinated for weeks (not unusual, procrastinator at heart). In time, I realized this was more than just the regular flavor of laziness, this was deeper. In order to write my story well, I’d have to confront my own feelings about food allergies, feelings I buried deep long ago. I don’t mind not being able to eat what others can, that does not bother me. What does bother me is something that probably everyone with allergies as bad as mine go through: loneliness. The truth is that living with food allergies also means being a victim to the emotional havoc it can wreck. First there’s the social isolation when what is a celebration to everyone else (food) is only a danger to you, or feeling like a buzzkill when you shoot down ideas on where to eat. Then there’s the physical isolation when you separate from the group out of fear or for safety needs. Finally, there’s the emotional isolation when you’re the only one who food is a danger to, or being known as the ‘food allergy kid’. All of that isolation hurts. But it’s not unbeatable. If you hang out with a group of people who make you feel bad for who you are, that is their problem, not yours, and you should split from that group immediately. As for the good intentioned people, remember this: everyone has an issue like food allergies. For some, it’s other medical issues like diabetes or asthma. For others, it’s parts of their past or current lives that they feel separates them from everyone else, like being abused or being constantly depressed. Whatever it is, every single person has something that makes them feel completely alone in a crowded room. I swear to you this right now: you are not alone, and you are not hated. Most people out there will accept you regardless of some medical condition. Just because food allergies are part of your life does not mean they are who you are.
Growing up and living with food allergies is not a Lifetime movie. It’s hard, physically, socially, and emotionally, and it’s dangerous. But, as I’ve said the whole time, hard does not mean unstoppable. Throughout this all, there’s one person I feel like I’ve unfairly left out: my mom. She has done more for for me and my food allergies than I can ever hope to repay in a thousand lifetimes, and that is not even slightly an exaggeration. Without her, I probably wouldn’t be alive today. I strongly recommend that everyone reading this get at least one person like that because, to quote the guy who gives Link the Master Sword in the Legend of Zelda games, it’s too dangerous to go alone. So don’t go alone. Surround yourself with people you love and trust, who will help you take on the physical dangers and carry some of the emotional baggage. Food allergies lead to a tough life, tougher than most ever have to worry about, but that doesn’t mean that life can’t be a great one.
Chapter 2 - Kirsten “Letting Go”
Two years ago, we moved Jaxon into his college dorm. I could have never predicted the lessons that I myself would learn and it wasn’t what you might expect.
Jaxon has severe food allergies to milk, tree nuts and fish. He started out life with 11 food allergies. After a life-threatening reaction as a baby, we began our journey as food allergy parents. My husband and I sought out a food allergy pediatric doctor at Arkansas Children’s Hospital. We educated ourselves and then made opportunities to educate others. We worked hard behind the scenes making activities like sports, parties and band as safe as possible so he wouldn’t miss out. I had a mission and I can honestly say that it consumed me.
The prevalence of food allergies wasn’t quite what it is today. I didn’t have the internet at my fingertips and I certainly didn’t have Facebook support groups. I did have determination. I didn’t want to accept the hardships that I knew my son would have to face every day. I wanted what all parents want for their kids--normalcy, inclusion and happiness.
So we made 8-hour round trips to Arkansas Children’s Hospital where Jaxon had blood and skin tests, food challenges and was one of the first participants in an FDA Phase 1 study in peanut Oral Immunotherapy. This study took Jaxon six years to complete and resulted in marking his peanut allergy off his list. The study was new, scary and involved trips to the hospital every two weeks. It would require daily consumption of tiny amounts of peanut powder in hopes that he would build up a tolerance. The only reason Jaxon agreed to participate was the hope that food allergy kids coming up behind him would benefit, and they certainly have as OIT is now a treatment option.
So after 18 years of learning from experts, there was one expert that I had yet to learn from. It was my son. When Jaxon was asked to write his story for 7 Billion Ones two years ago, he at first refused. I was baffled. How could he not want to take this opportunity and use this platform to teach others? He told me that he had nothing to say that would be worth reading. After pleading with him to write his story anyway, he eventually agreed to try.
I’m embarrassed to say that it never occurred to me that this would be a painful process for him. Throughout his childhood, he didn’t let food allergies hold him back. He played sports. He was in band. He went to parties. As parents, we did our due diligence. We supplied safe foods when possible, trained others on epi-pen usage, educated his friends, teachers, and other adults. As far as we were concerned, he was living as normal life as possible.
When I read Jaxon’s story two years ago, I cried. I cried for the isolation he felt despite my best efforts. I thought I had succeeded in helping create a life where his food allergies didn’t hold him back. But I learned he felt loneliness at times. Even though he would attend school pizza parties and act like it was no big deal by not eating or by bringing safe food, he still felt left out. He felt different because he was different and admitting this made these hurtful feelings very real. But what emerged from telling his story was his liberation. When Jaxon put his feelings on paper, he was arming himself with the tools he needed for the next chapter in his life.
Jaxon’s story was released just prior to starting college. Needless to say, we never imagined the reach it would have. As it turns out, Jaxon did have something worth reading. Jaxon’s positivity is contagious, but the part that resonated with most people was how he addressed the social isolation element of food allergies. As we received more feedback from the story than we could keep up with, we learned that his words were empowering other food allergic kids. And in turn, this empowered Jaxon.
That fall, Jaxon was asked to speak at a Food Allergy Research & Education (FARE) Teen Summit. He spoke in an “adult-free” room where he and his peers discussed how they deal with feelings of isolation in school, around friends, and in dating situations. They left the room feeling validated and strengthened knowing they weren’t alone. They learned it’s normal for their allergies to make them feel different in some situations, and that these allergies don’t define them. After the summit, Jaxon and his peers left with more confidence and determination to face their daily challenges.
When I drove away from Jaxon on his first day at college, I left with a new understanding. We had met with the food service company at his college three times during that summer. We informed the campus clinic about his severe food allergies and history of anaphylaxis. We talked with his roommate, who coincidentally happened to be an Eagle Scout with epinephrine training. And then I officially passed the baton to Jaxon and have watched him flourish over the past two years.
There have been a few a hiccups along the way, including two ER visits, but he has navigated through social events, fraternity retreats, and an Astro-physics conference. He no longer lives with the “food allergy kid” label and controls who and when he tells someone about his life-threatening condition. He has learned when and who to trust in preparing his food. Most importantly, he is finally living a “normal life” on his own terms.
As it turns out, Jaxon is the real expert on food allergies. Even though I’ve been with him every day on this journey, I have never walked a day in his shoes. Even though I have armed myself with research and medical facts, I have never known the feeling of sitting at IHOP drinking a glass of water while all my friends are eating breakfast and the staff decides last minute that they can’t provide me a safe meal. Even though I’d like to secretly follow him around each day with a basket of safe food, I have to let go.
