i think it's brave: even if you don't think it is
volume XXI ft. an interview with my sister, KC Grady
Hello to all my brave little turkeys!!! Happy Thanksgiving Eve, a made up holiday that usually means packed hometown bars but this year means another night drinking with your family in quarantine. It’s okay, it will all be over soon (I hope). Thank you for your patience waiting an extra day for volume 21 of itib, I needed some extra time to make sure today’s newsletter properly represented my interviewee: my sister, KC Grady. Find below snippets of our conversation as well as my own thoughts about KC’s journey with celiac disease, and why, even though she doesn’t think so, she is one of the bravest people I know.
Families That Run 5Ks
We have all seen the tweets and memes about marrying into a family that runs holiday 5Ks. They all look a little like something this:
I often laugh at these because they are supposedly mainstream and apply to “normal” people, which I want to be. But I have to admit that I used to wake up on Thanksgiving morning to not only run a turkey trot, but to run one 25 minutes away that was 5 miles. Tomorrow, 6 years since my last trot, my family will become the Internet’s biggest fear as we wake up to run 3.1 miles. The only reason we are doing this, besides the homemade mimosa bar at the finish, is to honor my sister KC and her fundraiser for celiac disease research.
For those of you who have never heard of celiac disease, here is the scoop. It is a hereditary autoimmune disease where the ingestion of gluten results in damage to the small intestine. It is estimated that 1 in 100 people worldwide have celiac, a number which heightens to 1 in 10 if you have a first-degree relative with celiac (like me). You can be diagnosed with celiac at any point in your life if you are a carrier, like both of my cousins who were diagnosed in their mid-20s. Currently, the only treatment is to adhere to a strict gluten-free diet, which includes avoiding everyone’s weekend favorites: bread, bagels, pasta, beer, pretzels, baked goods, the list goes on. If it has wheat, rye or barley, it is off limits.
GF AF
Maybe you already knew all that, because celiac has become more mainstream. However, we Gradys like to say that KC was GF (gluten free) before it was cool. Being GF became trendy in the mid-2010s when someone decided wheat was the enemy of weight loss. If you Google “gluten free diet” there are a lot of opinions ranging from medical studies to personal blog posts. In 2015, the director of the Center for Celiac Research and Treatment at MassGeneral said non-medical GF diets were "simply fashion." The article went on to say that most people don’t even understand what gluten is and being GF is just another fad from which the diet industry is profiting. Regardless of what information is true and whether or not the GF diet is healthy, there has been a rise in GF products which makes things a little easier on us medically GF eaters, especially KC who throughout the years has tasted her way through aisles of bad-tasting, overpriced GF options.
When I spoke to her this week about her experience living with celiac, she described to me the early days.
“When I was first diagnosed there was only one place we could go to buy gluten free food and everything was really bad. I remember that we went to cousin Jon’s graduation and I remember trying to order food and the only thing I could have was a caesar salad. I told them to not put croutons on it and they did anyways and I had to explain to them what celiac was. No one knew what it was at any event or restaurant.”
If you don’t understand celiac, you wouldn’t realize that even croutons touching her salad could result in KC getting sick. That type of cross contamination is what she believes is the most common misunderstanding about celiac. People think it won’t affect her if she has a small amount of beer at a party, or don’t understand why she needs to use a different toaster. Of course there is a spectrum, she explains, and one of her celiac friends doesn’t get sick at the same meals she does. This confuses people, the fact that celiac symptoms can have such a wide range, and that can cause them to not understand why it’s such a big deal. But cross contamination is the biggest struggle, and while some places are making strides, like asking if your GF order is preference or allergy, it is still something that makes KC frustrated in the same way she was when ordering a caesar salad all those years ago.
One of the statistics that we both find interesting is that an estimated 2.5 million Americans live with undiagnosed celiac. So while it may seem more mainstream, it definitely isn’t normalized and people are not as well-educated about its symptoms. And guess what one of the biggest symptoms of intestinal damage is? Gastrointestinal problems. Let’s be brave and say it out loud! Celiac is akin to IBS, and people find themselves on the toilet more often than the average person. This is one of the reasons celiac isn’t in conversation. With gusto, KC faced the topic head on, “You don’t want to put in your newsletter that I have to use the bathroom more, because there is such a bad connotation to that. If it was talked about more, less people would go undiagnosed, but it’s such a taboo thing. Sure it’s embarrassing, but it’s your body so it can’t really be that embarrassing.” If people were better educated about these symptoms, maybe they would realize it’s not normal and they would go get tested. If more people got tested, then perhaps more money would be raised for finding a cure. It would help those with undiagnosed celiac feel better in their day-to-day and in the long term, would provide more resources to the scientists and doctors who are studying the disease. All we have to do is put our egos aside, be courageous, and admit how we are feeling. Taro Gomi said it best, all living things eat so, everyone poops. If you’re having some issues in the bathroom after a simple bowl of pasta, perhaps a celiac test is in order.
Brave has many faces
The most interesting thing to me was KC came into our interview confused as to why it was happening. 6 and a half minutes in she stopped to clarify, “I don’t really think any of this makes me brave. It’s just a normal thing to have.” Herein lies the key to itib. When KC was younger, she would be mortified if my mom mentioned to the wait staff that she was GF. She didn’t want to draw attention to it, even though it was important for the kitchen to understand her allergy.
She sat in front of me at the kitchen table and said in all seriousness, “I’m very good at being sick. I’m very good at managing it.” That is exactly what an autoimmune disease looks like. KC is aware of her symptoms, she has to map out bathrooms on campus, and she knows exactly what she can and cannot eat before a track meet. She has to call our mom sometimes if she is out at a party and wants to leave, not because she had too much to drink but because she doesn’t feel well enough to stay. She is stealthy and doesn’t want to draw attention to herself, the same as she was when out to dinner with our mom at age 10. If you didn’t know she has celiac, you probably wouldn’t even notice. You might think in the back of your mind that it’s weird she sometimes disappears after meals or she can’t drink beer during drinking games, but it probably wouldn’t take up too much space in your mind. KC said to me, “I’m so used to having three best friends at home who are GF but for most of my friends from school, I’m the first GF person they’ve ever met in their life.” So for those HC classmates who don’t get close enough for her to tell them she has celiac, they might just never know what she is going through.
When I asked KC at the end of our interview what she believes bravery is, she said something that contradicted her original statement that there is nothing brave about having celiac. She said, to her, brave is, “waking up every day and fighting whatever battles are in front of you. No matter how big or small the battle or the hill, brave is if you keep pushing through.” She realized in this sentence that her waking up every day and facing celiac disease is brave. Perhaps to her it feels small because she has no choice but to do it. Her daily life requires her to wake up and deal with what it means to have an autoimmune disease with no cure. It comes with both physical illness and social anxiety, but it has also come with self confidence. She no longer is embarrassed to tell the waitress at the restaurant about her allergy. She is an independent thinker which allows her to make decisions that are best for her and her health, even if they don’t seem like the cool thing to do at the time. She jumped at the opportunity to fundraise for the Celiac Disease Foundation and will confidently talk to anyone about her experience, why she thinks it’s important, and why she thinks they should donate. The passion and courage is palpable.
It makes me proud to see KC now, 11 years later, so comfortable when talking about celiac. To her, she has no other option but to do her best. But I challenge anyone to be diagnosed with something like this and maintain the optimism and happiness that my sister does. She started fundraising for the Celiac Disease Foundation for a lot of reasons. First off, a cure would mean she could have an actually good bagel without getting sick, which is something she would really like. Secondly, she says she “[doesn’t] want the carriers in [her] family to face the social anxiety that comes with celiac. [She] wouldn’t wish that on anyone.” Bagels and keeping her family happy and healthy, you can’t get more selfless than that.
So far KC has raised $350 for celiac research. Her goal was to raise $500, but I think the itib community will be able to smash that out of the park. Think about all the coffees you have made at home this year, all of the Ubers you haven’t paid for, Metrocards you haven’t reloaded. If just 40% of my readers donate $10 we can double her goal! This is a great cause, and an even greater person to support.
We will be running tomorrow morning as a small group (COVID!) to celebrate all of the awareness and money KC has raised this month. If you would like to run with us virtually, simply tag @ithinkitsbrave on Instagram and we will share your photo! As KC says on her fundraising page LETS GET THIS BREAD!!! And hopefully in the years to come, that bread will be full of gluten for our girl KCG :)
as always, be brave, love meigs ♥️