I normally write about celiac disease. I cannot today. I feel small and my heart is breaking for a variety of reasons.
I have a friend who has a daughter fighting for her life. She is battling sepsis for the 5th time in the past 12 months. Another friend just had a successful stem cell transplant but caught an infection along the way. For the past two weeks, he has been in a coma and they are concerned he will not recover. Those are just the small challenges specific to my life.
There are bigger challenges hurting our nation right now. I’m not eloquent enough to put words to the pain and heartache many people are enduring right now. Losing friends and loved ones to a virus. The riots engulfing the nation each evening. The pain that racism has inflicted. For me, there is just a lot of pain, unease, and sadness right now.
The image that really struck me as to how far we’ve fallen is the image of the White House flood lights being turned off on Sunday night. In the middle of all the chaos, the leader of the free world turned the lights off on the beacon of hope and light in this world.
I have always thought of America as a shining example of what a country could be. Yes, we’ve had our faults and America is not perfect. But I’ve always felt like America was striving to be the best it could be. I felt like we were the “shining city on a hill” with “a thousand points of light”. I just felt like we were working towards the same goals and all had the same vision and common experiences. It seems I was wrong or my rose colored glasses are a little smudged.
I cannot write about celiac disease today. I started to write about KAN-101 and some other new clinical trials today. The words wouldn’t come. I was doing the research and somehow it all felt unimportant. There are bigger fights to have or am I just tilting at windmills.
The small is the most important. The small is what creates larger change. The small is how we start. My small little blog hopefully has educated some folks on celiac disease so they don’t feel like it is a death sentence with no more joy to be had. My small little blog advocates for people to join clinical trials to help propel science and drug research forward. I advocate for people living with the disease and not hiding under a bush because they are afraid of getting glutened.
If one person joins a clinical trial or study because they learned about it here – then that’s a win. If one person gets a family member tested and diagnosed because I wrote about testing and genetic markers, then that’s a win. If one person can more easily explain cross contamination to a friend, then that’s a win. If one person can order at a restaurant or shop more safely because of what we are doing here, then that’s a win.
I’m just trying to be a voice that presents a more even view of this celiac life. I want people to live with celiac with grace, humility, and humor. Grace in that we give others the benefit of the doubt in understanding celiac. Grace in that we don’t expect friends and family to do be able to get everything perfect in the gluten free diet for us but when they do we are grateful! Humility in that if one doesn’t remain vigilant, this disease will hurt them. Consuming gluten will rain hell fire on your body if you aren’t careful. Humor in that, well, it is better than crying. Humor also helps when trying to diffuse the butthead that is ranting about how a gluten free diet is just a fad.
Anyway, I’m sorry I couldn’t write about celiac today. I will be back tomorrow.