Editor’s Note: Patient Worthy is honored to share the following caregiver story, submitted to us by Jon Scheinman of The Epilepsy Foundation. To see the article in its original format, please visit Jon’s LinkedIn.
Today, my daughter Livy is finishing a 72 hour at home video EEG. She’s had many of these over the years, most of them in medical facilities. This is only her second one at home and the experience is far superior.
Over the last several months, we’ve been seeing some abnormal activity that concerned us so we felt it was time to take a closer look and Livy’s epileptologist agreed.
As this test wraps up, I keep thinking about what it must be like for the technician monitoring the footage. They get a glimpse into people’s lives. They peer through a window into what happens in a home over a few days.
But it’s just that… a sliver of time in a patient’s and caregiver’s journey.
They see Livy’s feedings through her MIC-KEY button, but not the process of securing affordable blended food, the closet full of supplies, or the daily preparation of meals and supplements that provide nourishment.
They see us administering current anti-seizure drugs, but not the titrating and weaning of over a dozen previous failed medications and the hours spent coordinating with doctors, insurance companies, and pharmacies to ensure all of those medications arrived on time.
They see us checking on her multiple times during the night but don’t see the 22 years of broken sleep and what that does to our health.
They see me working with her on head and neck control, but neither the thousands of hours both me and physical therapists have contributed to get her to this point nor the ongoing effort required to maintain what muscle tone and flexibility she has.
They hear the sounds of our home, our voices, and our routines, but not the intense discussions that happen during medical crises.
They see the many kisses we give her, but not the years of strength, hope, and love behind each one.
Most of all, they see her incredible smile. A smile that somehow continues to shine despite all the trauma she has endured. A smile that brings peace, light, and beauty into the world.
We hope this test uncovers something new. We don’t have many medical options left for seizure control, but knowledge has always guided our decisions. Knowledge is power and it helps us build a plan to move forward.
To the Field EEG Technicians who come into homes to attach leads and set up equipment… To the Remote Long Term Monitoring Technicians who watch hours of footage…
To the Neuroanalysts who prepare the data for neurologists and epileptologists to interpret…
Thank you. We are grateful for what you do.
You may only see a fraction of the journey, but your work has a profound influence on what comes next.
#CaregiverPerspective #CaregiverJourney #Epilepsy #Seizures #Resilience #Hope
