The last time Kim Hartmann participated in the Patients Have Power writing contest, she wrote of the incredible hope of clinical trials, their advancement, and the promise they held for treatment options. She also spoke of disease as the elephant in the room, this thing that looms large in our existence. We don’t speak of these elephants. They make others uncomfortable, perhaps a bit too aware of the fleeting nature of wellness. Kim spoke of the elephants in an acutely personal way. She blended her professional experience in nursing, with a passionate voice to create an unmistakable impact within the advocacy community.
Kim became the best version of herself when she was engaged in advocacy work,
whether it was for dysautonomia, clinical trials, or the numerous other health conditions she lived with, she was tireless and selfless. She spent long hours volunteering her time, whether that was on her computer compiling research, participating in Twitter chats, attending meetings, or serving as a medical and clinical liaison. When Clara Health started the Breakthrough Crew, an ambassador program for clinical trials, Kim was one of the first members to join. She never
missed a Twitter chat or failed to join an initiative and that enthusiasm attracted others to this important cause.
Every moment Kim spent sharing her story, she was a powerful and reliable voice for those who felt they had none.
She really seemed to shine at patient conferences and any time when she was able to meet other advocates. We weren’t just names or diagnoses to her, Kim cared about us as individuals first.
When I think of Kim, I prefer to think of fireflies. They were something that she felt a special affinity towards, even making an appearance in her personal Twitter handle, @fireflyrn84. Fireflies provide glimpses of light as the day gives way to night. Kim and I often spoke of this in philosophical terms, dusk representing an in-between stage. There is so much time spent living in the unknown and wanting some measure of certainty. Fireflies, in that context, and especially during our last conversations were symbolic. They were a guide towards somewhere that was just within reach. In following them, it was always possible to find knowledge, the promise of new providers or treatments, or even rest at the end of a long
journey. I feel that Kim spent so much time close to the fireflies that it made her different somehow, more compassionate and selfless.
One of the most difficult things for an advocate is wondering if you have done enough. I remember Kim trying to push through some of the worst days, just so she could complete one more task. It was so important for her to provide knowledge and empower others to make the best health decisions for themselves while she still could.
Eventually, she was too tired and we both had to admit that it was time to rest. That would need to be enough. It was a painful decision and we both cried, as close friends do.
The last time the Patients Have Power writing contest took place, I remember Kim
reading me her entry over the phone. She was excited and I thought it was excellent, especially because it came from her heart. Failing to place first just made her excited for the next contest as she felt sure she’d eventually place first. Unfortunately, that opportunity never came.
The Kimberly Hartmann Award is a testament to her heartfelt and informative writing. Most importantly, it reveals her lasting impact on the community and on each of us who were blessed to call her a dear friend. My life, and my personal work in advocacy was irreversibly changed by my friendship with Kim. Some days the loss is agonizing, but according to Justin Cronin, “[a]s long as we remember a person, they're not really gone.” This award is an honor, but also a mass-remembering. She is still with us. Kim was, and will remain, a sparkling firefly,
guiding us all towards that something that seems just within our grasp.