it was more the fatigue from the effort it took to shed light on the needs of patients and caregivers, and then the disappointment when no one else in the room shared the sense of urgency or importance as people literally faced the end of their lives.
amid all of this, we were also gratefully aware of the difference that any kind of support made for us when we faced our own scary diagnosis: “it pulled me back from the ledge,” he would always say. so it seemed like a no-brainer to work toward the dream that one day, no one would feel the fear, isolation and hopelessness that we did.
my friend took a job in technology, writing plain language copy for an ai-focused company that focused on weather prediction. “a digital weather vane badass,” is how he described his role. but he didn’t quit advocacy completely — his tumour made sure of that. still, the work didn’t get any easier.
being a badass is hard, it doesn’t pay well and the finish line is always moving further away. if you are a living the life of a patient or a caregiver who often feels compelled to ask more questions, investigate options or complain when care stinks, then you also know that there are often more losses than wins. there’s also a lot of time spent in strange holding patterns where you’re unclear whether you are getting ahead, doubting if you are making a difference and worse, wondering if it’s even worth it.
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