THREAD: So I want to talk for a minute about medically fragile/disability families, weariness, and why you are part of the solution.
Being someone who is medically fragile or disabled or being their caretaker is hard. For many of us, it’s a 24/7/365 job with few or no breaks.
Being someone who is medically fragile or disabled or being their caretaker is hard. For many of us, it’s a 24/7/365 job with few or no breaks.
When we hit a good “flow”, sometimes we have a little time and energy for “extra” things like trying to keep Congress from stealing healthcare from us or our family member.
But sometimes, medically fragile life throws extra crap our way and it gets harder.
But sometimes, medically fragile life throws extra crap our way and it gets harder.
Right now, Savannah is in the middle of a cycle of clinic appointments, we are making changes to a few meds, and we are having consults for yet another surgery.
It is a lot. I am tired. I am weary. And I am spread so thin most days I don’t know which way is up.
It is a lot. I am tired. I am weary. And I am spread so thin most days I don’t know which way is up.
Unfortunately, one of the first things to slide most days is beating my head against the brick wall that is the GOP. So I may only call, not email or use @resistbot that day.
But then I panic and feel guilty that maybe my choice to put my kid before Congress might cause harm.
But then I panic and feel guilty that maybe my choice to put my kid before Congress might cause harm.
I worry that my email not being sent might somehow be the catalyst that causes the ACA to be dismantled.
Logical? Probably not. But when you spend all day every day managing a medically fragile person where one mistake can cause irreversible harm? That’s where my mind goes.
Logical? Probably not. But when you spend all day every day managing a medically fragile person where one mistake can cause irreversible harm? That’s where my mind goes.
So I try to push through to do it all, even on the super weary days, because I know to most people, the health care fight isn’t as desperate as it is to families like mine. It might be forgotten, but to us it is ever present.
But you can help.
But you can help.
Commit to the fight, day in and day out. Call every day for those who might not be able to. Email. Use @resistbot. Anything.
Do it for the medically fragile family who can’t because they’re inpatient.
For the DACA recipient paralyzed by fear that day.
Do it for the medically fragile family who can’t because they’re inpatient.
For the DACA recipient paralyzed by fear that day.
For the low-income person who can’t make it to a facility with internet to email.
Because knowing that everyone else is stepping up, fighting, and refusing to stop sincerely helps us on the days where we struggle just to make it through the day.
Because knowing that everyone else is stepping up, fighting, and refusing to stop sincerely helps us on the days where we struggle just to make it through the day.
Because really, if we aren’t all taking up each other’s battles, what are we even fighting for?
On your good days, fight twice as hard for the ones who are having bad days.
And on my good days, I promise to fight twice as hard for you.
/fin
On your good days, fight twice as hard for the ones who are having bad days.
And on my good days, I promise to fight twice as hard for you.
/fin
