As I lay still inside an imaging tube, I think about how grateful I am to be here. I’m at the National Institutes of Health, currently in the middle of my 6th scan in 4 days. I’ve worked for 5 months and traveled over 1,300 miles to participate in a research program specifically for my rare condition.
If there were a Mecca for rare disease patients, it would be the National Institutes of Health. We’re all rare here. We come from all walks of life. We are young and old, we are from all different races, genders, religions and countries. We all have difficult-to-say conditions with impressively small statistics, numerically proving what a rarity we are. Some wear it like a badge of honor, some prefer not to talk about it. In either case, I’m blessed to have met these people. We are so different, but we share so much of the same experience- the rare life.
We fight back against our conditions everyday as well as the implications of our rarity- baffled doctors, delayed diagnosis, lack of treatment options. We are all here, not just because we need help, but because we want to use our pain as bricks to build a better future for others with the rare life. We subject ourselves to a gauntlet of testing. Countless blood draws, needles in every accessible vein, multiple IVs. We endure radioactive injections, spend hours motionless in claustrophobic tubes. We run ourselves ragged from one appointment to the next, pushing our tired bodies in the name of science.
When I see other faces with me in waiting rooms I feel their weariness. We are all bruised and scarred. We are soldiers in the war on rare disease, and we’re all in this together. One woman in a wheel chair told me, “This is only for the strong.” I know what she meant, not the strong in body, but the strong in spirit. The rare life makes you strong.
Hot tears stream down my temples and into my ears as I stare up at the inside of the imaging machine. I have to lay perfectly still in the tube. I miss my family. My daughter is my driving force, she too is rare. We share the same genetic condition, Multiple Endocrine Neoplasia type 2a. I know that everything I do is for her benefit. Too many people suffer and die unnecessarily because of lack of knowledge or treatments. I will do everything in my power to insure that this NEVER happens to her. I will teach her how to live the rare life, to find your own answers when everyone else is scratching their heads, to clear a path when there are nothing but obstacles in your way, to speak up and demand the care you need when you’re brushed aside, and most importantly, to find joy in each day you’re given.
This is what it means to fight.
This is the rare life.