Claire 4 Rare Meets Taylor Schalk

Taylor And The Gift of Perspective

Welcome back, everyone! This month’s story is a little bit different and provides a new point of view. I’d like to introduce you all to Taylor. Taylor is a Junior at Carrol University studying nursing. No doubt the product of her personal experiences in the medical field.

Taylor has a rare disease called Superior Mesenteric Artery Compression Syndrome. This is a digestive condition that occurs when the duodenum, or the first part of the small intestine, is compressed between two arteries, the aorta, and the superior mesenteric artery. This compression causes partial or complete blockage of the duodenum. The symptoms, progression, and severity of this disease vary drastically. In Taylor’s case, she began to feel ill in the year 2010. She was suffering from extreme exhaustion, nausea, and pain. She could not eat and as a result, became extremely malnourished. An answer was needed quickly before it was too late for Taylor. The crippling and hope-crushing journey from doctor to doctor and hospital to hospital began. Finally, in 2018, Taylor received her diagnosis. A LADDs procedure, a surgery performed to alleviate intestinal malrotation, was done to release the blockage. Aside from a few complications and an additional surgery, Taylor began to feel better. She slowly reintroduced food into her life, with many dietary restrictions, and later on, began her college career. However, as I can attest to, having a rare disease in the “real” world comes with its ups and downs.

When you’re in the hospital, you’re “normal”. Medical anomalies and hospital jargon is second nature and all that we know. The unforeseen, but sometimes equally challenging aspects present themselves once you are discharged from the familiarity and safety of a hospital room. Taylor and I discussed the similar problems we’ve faced and shared a few laughs over the ridiculousness of our situations and the things we tend to worry about. I expressed my fear of transitioning from pediatric care to adult care and how I won’t know what to do without the people I’ve whole-heartedly trusted, admired, and even loved over the years. She shared with me her experience and a few words of wisdom. We talked about how it’s difficult to make friends our age because they tend to have different priorities or worry about things that seem irrelevant to us. For example, someone who expresses their annoyance with the ridiculous amount of time they spent in line to pay a ridiculous amount of money for a ridiculously sized coffee becomes annoying very quickly when in your head you’re worried about lab results or the next surgery you may or may not need. We also expressed how we felt bad about our lack of sympathy when it comes to “normal” everyday problems others face. Sure, some fears or worries may not be the same as our own but that doesn’t make them any less important or relevant. Taylor shared with me the challenges of budgeting her energy and how that can affect relationships as well. Unlike most people in their early twenties, Taylor does not have an endless amount of energy. So, when friends ask her to go out for dinner after a long day of classes or work, she reluctantly declines knowing that some people may not understand that her version of, “I don’t feel good” is much different from everyone else’s. She says, “I hide it well, not that I’m ashamed or that I want to hide it, but it’s just easier sometimes.” We also expressed our frustration with today’s generation and their undesirable habits of drinking, vaping, or other things that harm their perfectly healthy bodies. We shared the things we’d do for a healthy body but also how thankful we are for our diseases. Thankful for the perspective it’s given us. Taylor stated that every day she wakes up she is happy to be alive and sometimes people find her annoying or odd because of her relentless positivity and excitement for life. Who doesn’t want to live their life filled with joy and optimism? A lot of people apparently, which makes us all the more grateful for our unique perspective.

Getting to know Taylor was such a fun process for the both of us as we were able to relate to each other and share without fear of misunderstanding or seeming “weird”. I hope that Taylor’s story and her outlook on life inspires everyone as much as it has inspired me.

What does RARE mean to you?  

By definition, I think rare means uncommon. In the world of rare disease, I think that definition applies, but specifically, rare disease means that not many people have the same condition, and their struggle is unique. Many times, rare diseases can be dismissed, and ultimately ignored because that specific disease is not affecting a large amount people. So, it leads to this cycle of a lack of research, and then a lack of education, and then underdiagnosis. To me, it’s really important to try to break that cycle, and in doing so, hopefully, it improves the lives of those currently living with that disease and those that will be affected in the future. No matter how rare the disease is, it’s never too rare to be educated on. Awareness is the first step in improving the quality of life of those living with the condition, as well as all of the family and friends who are impacted.

If you live with a rare disease or know someone who does, please email me at claire.bevec@harmony4hope.org. I would be honored to share your story here! If you don’t feel ready to do so, that’s ok too. I would be so happy to just meet and chat with you. I understand sometimes it’s hard to find someone to talk to who also knows what living with a rare disease is really like. We’re rare, but we’re there!