Early Successes in Remote Research: Enabling Enrollment in Clinical Trials
October 30, 2024
Life changes, people change, and the world is forever moving. This concept seems so easy to understand until you find yourself in a situation that forever changes the path your life will take.
I look at myself, now five years after the loss of my dad, whom the ALS world will often hear me refer to as Ton, and thinking about the bumpy path my life has been on still puts a pit in the bottom of my stomach.
I never expected to see who I am today staring back in the mirror, but honestly, this version is who I was always meant to become. I am the strongest and happiest version of myself. I am also nowhere near where I had planned on being, going, becoming, or wishing to become. Isn't it crazy how life works?
November 2017 was when I learned that my life would be different. The future I imagined needed to be erased, and I needed to rewrite my future story without my dad quickly. Something I did not consider back then was the reality that I would never actually be without him. From how I cook dinner to whistle around the house, the weird names you make up to call everyday objects, the way I parent my children… brother and mother too (let's be honest, I'm a mother hen).
I'm a protector by nature, and protecting my family only grew stronger when I became a mom. I hated knowing that with ALS, I could not save Ton, I could not move a mountain, I could not Google myself into a form of a cure, or find a way to protect him from the "bad bug" the name we gave it to explain it to Thor, my oldest who was a little over two years old at the time of diagnosis.
But then I found my ability to walk and talk. I found a way to 'Mama Bear' myself into the lives of others with ALS, a welcoming community where It is not hard to want to fight for anyone impacted by the disease.
Over the last five years, my path has been a winding and narrow road. You would never believe a road would have such a beautiful view at the end because the path never indicated anything but a mess. I thought I needed to rewrite my future, one that was different from what I envisioned as a little girl, one without my dad. I have since learned that loss does not mean a life without; it means there is life to learn- a life to rewrite.
When rewriting my new normal, what was to be my journey, all I knew was that I was not done being on OUR journey. I knew whatever path I was about to go down would be one where his legacy would follow.
One of the first things I tell patients during our first meetings is about Ton, the path that led me here. I did not aspire as a little girl to be an Insurance Specialist, but then life happened, and I learned firsthand how unknown, scary, and trivial it is to navigate the insurance world with a diagnosis. I tell them this just like I sit here and tell all of you this because meeting with me is like sitting down with a family friend at a dining room table and asking for advice. The options and advice I give come from something much deeper than the internet and books; they come from lived experience.
The insurance world does not understand the diagnosis. It does not know, understand, or truly grasp the needs of a family in the trenches. Does that make it right? Absolutely not. The best way to get the insurance world to understand is to educate, appeal, and fight for what we know is needed and right, and I do not expect you to have to do that alone.
As a teenager, I argued with my parents about what I thought was right about curfew, the latest threads, and all the things I thought I knew. As an adult, and in my role, I enjoy that the teenage me gets to come out again, but this time with insurance companies and, more importantly, this time with experience in life that I know I am right.
I know the struggles, the expenses, the heartbreak of denial, and why this, that, and the other things are needed for daily living. I've realized that I never needed to rewrite my life's journey, but I needed to rephrase it. Arguments with my parents became arguments for patients. Hour-long conversations with my mom centered around commercial insurance vs. Medicare have become hour-long appointments with patients and caregivers. I never expected to sit behind a desk when my education was to teach in front of one, yet here I am- the happiest version of myself.
My life fell apart to teach me that life is not having it set in stone but knowing that a journey is a path meant to be explored.
…and if the path's ending is not what you envisioned, rewrite it.
