rare

A few years ago, I was looking for a photo or video for a project that showed me hooking up to my TPN, the intravenous solution that feeds my body. I couldn’t find any. I had a small handful of pictures that captured my pump while I was infusing, but even in those it wasn’t the main focus. This routine of hooking up is something I have done almost every day for the past 30+ years, around 10,000 times in my life, and I couldn’t find a photo of it. Not a single one. At first I thought this was so strange, then I realized it somehow spoke a greater truth about the life I have chosen.

My photos show me doing life, they tell the story of slumber parties, birthdays, bad haircuts and big accomplishments. Given the photo album of my years up until this point, it would be challenging to know I had experienced anything more serious than a paper cut. 

My life is not defined by disease, but it is not unchanged by it either. Chronic Illness is a tightrope of listening to your body, but choosing to not let it be the loudest thing about you. In any given day, you may be managing symptoms, carrying pain, juggling appointments, infusions, procedures, while still trying to keep up with life.

I rarely vocalize what my behind the scenes struggle looks like with a rare disease, not for the sake of denying it or being ashamed of it, but just to have the capacity to fix my focus on what is in front of me and beyond me. Giving into illness places pain at the center of your world, and everything in turn revolves around it. This could be said of anyone who has experienced hard things. There is a choice you have to make to allow that thing to be the focus of your life, the center of your orbit, or to choose to live with it, and still beyond it. Living with, yet beyond the noise of an illness is to choose a life that is bigger than the pain. It is beautiful and rewarding, but so hard fought.

The RARE movement champions those living with a rare disease, not because it sees them as more special or to celebrate disease itself, but the purpose is to come alongside and encourage those who are fighting to hear the symphony of life over a very noisy body. 

The National Organization for Rare Disorders (NORD) is a leader in this cause, and they have advocated and raised funds for the 30 million Americans with a rare disease. Many of these patients struggle to find treatments or research specific to their condition because of the limited number of people who live with that disease. With the help of NORD and others, these small subsets of conditions are being brought to the forefront of the medical community, and their voices are being heard. 

I now have a few images that capture my TPN routine. Some are with friends who share this same need for IV nutrition, others have been taken to use as visuals for speaking engagements, and some are just of me doing life with my backpack and tubes. 

They are still the minority, and the album of my life is continuing to overflow with moments and experiences that are not focused around an illness. Even though it is a part of my world, it is not the center of it. 

Today, on Rare Disease Day, I join the chorus of those singing the truth that a beautiful life can grow in the midst of deep pain and suffering. Our song is louder than our diagnosis. #rarediseaseday #shareyourrare