My previous LTE written from a patient’s perspective regarding Proposition 13 made it onto Facebook. A now-deleted comment did more than question my integrity, as though the indignity of sharing the despair that almost took my life were untrue. Insinuating it was fiction manufactured for this election cycle is beyond the pale.
On average, it takes 5 to 8 years for someone to receive my diagnosis, which is in line with many complex and “unseen” diseases. Years of unnecessary suffering, endless costly tests, income lost, and perhaps the worst of all is the indignity of not being believed. After diagnosis begins the futile years spent trying to manage what you are told is incurable.
It is incredibly challenging to maintain the fortitude, determination, willpower, and strength to research protocols that fail, repeatedly—again and again—until miraculously, one might finally work and healing begins. More than 25% of those with my condition take their own lives, as the enormity of this moment-to-moment effort to overcome and maintain hope is beyond what most can imagine.
This is the definition of character.
Revealing this struggle was difficult for a private person like myself, but it was important for me to reintroduce the human element into a discussion traditionally focusing on the numbers. I expected pushback, looking forward to learning what I may have missed in my research. What I did not expect was someone basically calling me a liar.
Someone with the luxury of never suffering so deeply-never forced to watch their loved one become so incapacitated, never burdened with caring for their spouse 24/7 while wrestling suffocating guilt at being unable to keep up with basic human needs. Someone who has absolutely no seat at the table to cast judgments upon what nearly broke me and my family, leading me to believe that taking my life would be a viable solution.
This is the definition of ignorance. Lack of knowledge or information.
While this was a personal attack upon me, situations like this are why so many suffer in silence—where speaking up is met with mockery and disbelief from those who have never endured the battle.
I deeply question the values of the person claiming my illness was created to sway voters. Is this really the best we can do, to reduce thing to political conspiracies and not believe suffering is real?
I am outraged beyond what I thought possible. I recognize this is fundamentally changing me.
This tax was never about politics for me. And now it’s not even about the tax. It’s about giving voice to those who have none, those deep in life-and-death struggles. It’s about overworked, over-burdened caregivers who often don’t reach out-there’s simply no resiliency left to endure a response like this. Kicking the downtrodden doesn’t just reveal character, it exposes a moral collapse disguised as ideology.
This is not a plea for a vote, this goes well beyond a single issue. It’s not even about sides. It’s about soul. It’s for those so caught up in waging a political war against the other side that they forget the people they are fighting over. Maybe your neighbor, your friend, your family member…or even you, one day. Regardless of your political stance, be mindful of your own character.
Don’t become what you despise in the name of what you believe.
Samantha Bonsack
Moab
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