Every game, the men of Northwestern Football leave the tunnel to a sign with an important reminder: “trust yourself.” Each player touches that sign before they head to the field, and I can only imagine how many times that saying has quieted a restless mind or encouraged the team to fight past an opponent they were supposed to lose to.
“Trust Yourself.”
What a simple saying, yet what a powerful message.
But what happens when you can’t trust yourself? What happens when your world turns upside down from a rare disease diagnosis, or your body begins to fail you? What happens when you feel crazy because the symptoms you describe are not what the doctor says should happen, and so “there is nothing left to try”? What happens when society writes you off because you can no longer work in a traditional sense, so you’re deemed less valuable, less worthy, and a drain?
While these questions are intense, they are real, based on my own experiences. Each one of the above questions I had to grapple with and answer. By 2020 I was lost, desperate, and teetering on the edge, feeling like my life was absolutely out of control. That’s when I found Northwestern Football – or, should I say, they found me – and dramatically altered my journey. Two young men from Uplifting Athletes’ Northwestern chapter read an article about my struggles and reached out. They wanted to know how they could help. They wanted to know if I was alright. Most importantly, they wanted me to know that they saw me.
I don’t think those men fully understand how that encounter, and the subsequent friendship that developed, changed the course of my story and gave birth to the beginnings of what would become the Press4Hope. It was those two men, and eventually the whole Wildcats team, that helped me learn to trust myself.
Through this newfound trust, I was able to find new doctors who listened and assured me that they believed me. They offered to help and more than anything, they gave the promise that they wouldn’t give up on me. I began to realize that not all of society viewed me with disdain, and I surrounded myself with those who chose to lift me up rather than tear me down. I stopped giving so much power to how I was viewed by others, because I finally believed that it is how I view myself that really matters. Most importantly, I reminded myself that I am more than a rare patient. I am Marni — only I get to decide how I’m defined, not this disease.
Please join me in person or cheer me on virtually on October 29 when I turn what I used to think of as impossible into reality. I will be attempting to bench press more than 6,525lbs in under 10 minutes to beat the average amount of weight pressed by Northwestern Football during their Lift For Life charity event. In fact, I will attempt to take it one step further and press over 7,000lbs total, in honor of the more than 7,000 known rare diseases. I might accomplish it, I might not. The one thing I know is that there is no better community I’d rather put myself out there and fail for, than my rare disease family.
Press4Hope may appear to be a physical challenge because of the way I’m choosing to participate in it. But in reality, it is a challenge of self-reflection. It asks every one of us to examine what limitations really are in the context of our own lives. It is a call to action to recognize those things which truly limit us, the things that we just cannot do, and what we believe are limitations but can be accomplished with modification. Finally, it is a plea to recognize those things we see as limitations but are only a reaction to fear or a form of acquiescence.
It is a chance for each of us to ask ourselves, “What thing can you do today which seemed impossible only yesterday?”
For me, the past year has been a journey in answering this question. What I have discovered is that with the right support, right tools, and a willingness to try new things (and fail at them), there is a lot more out there in this world I can do than I ever thought possible.
Well, except jars. Due to my lack of fine motor control, I most certainly cannot overcome my inability to open them.
Marni Cartelli is a patient advocate and Uplifting Athletes ambassador. After a work accident caused the rare disease Complex Regional Pain Syndrome (CRPS) to develop, she began the arduous diagnostic and treatment odyssey many rare disease patients find themselves on. It was the transition from medical provider to patient caused by CRPS which showed Marni that obtaining a diagnosis is only one piece of unlocking the puzzle of a rare disorder. She now fights for patients to get accurate diagnoses, receive timely treatment, and gain access to the full spectrum of services needed for patients and caregivers. While never giving up hope for herself, Marni looks at her fight as a way of trying to save the next person diagnosed with a rare disease from going through similar obstacles.
