From Loss to Legacy: Healing Through Advocacy

On May 22, 2023, my life changed forever.

Just two months after her cancer diagnosis, I lost my mother.

As the sole child of a single mother, the magnitude of this loss surpassed anything I could have ever anticipated.

In the aftermath, I grappled with the challenge of rediscovering my identity, compelled to define myself independently of the influence of my mother. Previously, I had worn the titles of daughter, wife, and mother, each contributing to the essence of who I was. Being a daughter was an innate part of my identity, bestowed upon me without effort. Now, with the absence of the most significant figure who granted me this title, the responsibility fell upon me to shape a new identity.

Since her transition, I navigated the labyrinth of grief, funeral arrangements, and estate management, all while trying to maintain my duties as a wife, mother, and business owner. The tasks were daunting, and numerous times I wanted to curl myself up into a ball and die, but with the unwavering support of my father, husband, team, mentors, colleagues, and family and friends, coupled with prayer and meditation, I found the strength to persevere.

In mama’s brief but courageous battle with cancer, she never once faltered in her faith; rather, she drew closer to it. Her steadfast conviction seemed to defy death, maintaining a serene smile as if she had already conquered it.

During this time, I assumed the role of her healthcare advocate, a responsibility she had never given me before her illness. This experience gave me firsthand insight into the challenges caregivers face daily. As a health information professional, I must stress that there is so much work to be done in this realm.

Remarkably, amidst my personal struggle for self-definition, it underscored the urgency I have in supporting HIM professionals in aligning with their true passions while addressing the social and economic factors influencing our health. I am still committed to relentlessly pursuing my goal of enhancing patient health access and education through the sharing of health information.

This commitment led me to craft this article with AHIMA, the first of many initiatives I have undertaken to champion these causes. The article sheds light on the deficiencies I encountered as a caregiver, challenging healthcare institutions, clinical practitioners, and EMR/EHR organizations to do more to involve the patient and their caregivers in their personal healthcare journey, extending beyond mere medical record proxy access.

After months in my cocoon and as the current year draws to a close, it is the opportune moment for a renewed emergence—with heightened focus, increased vigor, and a rekindled passion to fulfill my purpose.

In the words of Nipsey Hussle, "The marathon continues".

I now know who I am and what I need to do. I promise I'll continue to make you proud, mama.

Time to get back to work.