Saturday, January 14, 2017

The Devastating Dismantling of the Affordable Care Act

I have been thinking a lot about the Affordable Care Act and am so sad watching it be dismantled. It's a terrifying prospect for so many people. This feels personal for me too, though I want to emphasize that I am one of the lucky ones that is less likely to be dramatically affected by the ripping apart of necessary healthcare, piece by piece. Because currently I can work, and have health insurance through my job, I am not likely to be devastatingly affected like so many of my disabled friends. 

I do want to talk specifically about the pre-existing conditions clause. This has directly affected me and is likely to continue to affect so many disabled people. 

8 years ago, I didn't have a job. I had spent 9 years at home with my own children. Then my husband lost his job and the company he had worked for no longer existed. So we needed to purchase health insurance for our family of 5 through the private sector.

Besides the ridiculously expensive payments, we were hit with another surprise. I was told I was ineligible to purchase health insurance because I had a pre-existing condition. 

The funny thing was that this pre-existing condition was news to me. I had seen a doctor earlier that year for suspected migraines, and that was the pre-existing condition that made me ineligible. 

I want to be clear that I think everyone should be eligible for health insurance. Anything less is a death sentence for people with chronic illness. That is important. 

It was terrifying to hear that I am ineligible for health insurance because my possible migraine could be a possible brain tumor. So the logic was that the person with a possible brain tumor should be without health insurance. 

It kept me from pursuing treatment of migraines. 8 years later, they are still disabling and still untreated. Because it became too scary. 

So now I sit here in what is really a place of privilege. I have health insurance through my employer. My whole family does. So we will be unaffected. 

But I also come at this from a place of being terrified. I recognize that I need mental health care for my other neurodivergences. And yet, that will just be another pre-existing condition. And what happens if my situation changes? 

So I am by far not even close to the terror that this can really be for so many people. And yet, I am close enough to it to recognize how terrifying this is for so many of us. 

And I want to point out that many people supporting this dismantling of the Affordable Care Act claim to be Christians, supporting life and caring for other people. But I am sorry, this simply can't be true. You are supporting killing us. 

Wednesday, January 11, 2017

Invisible Person

I use this space as a place to map out my thoughts, especially when my feelings are negative and I have unsorted thoughts. So it can be a stream of consciousness,  but it is real, and it helps me sort things out. 

So I am thinking about how I am this invisible person. I've always been invisible, even to people close to me, maybe even especially to people close to me. 

I get it. I'm quiet. I have a hard time interacting with people. If anything makes me even a little uncomfortable, I have an even harder time interacting with people. I don't stand out. I don't have amazing or novel ideas really. I'm certainly not the life of the party.

But what I am is the lynchpin. I quietly hold things together and go mostly unnoticed. Sure I am there if you come looking for me. I'll be there to celebrate with you when you are happy about something. I'll be there to try to help you through it when things go wrong. But it is in a quiet way, steady, slow, silent.

The problem is that while I definitely do not want to be the center of things, I like the background..... I do wanna know people care, that they see me, that they remember I am there, holding things up in the background. Sometimes I feel forgotten. Lost. Because invisible you know. But that doesn't work for me. I need to feel remembered and cared about, or I quietly walk away, because I don't know what else to do. 

Once, as a kid, I had a meltdown, and loudly cried, saying to my family, "you treat me like a speck of dust in the corner." They dismissed this, and laughed about it for years after. But the sentiment holds true today. Back then I was crying out, trying to articulate the same thing I am still trying to articulate today. That I need to be seen. I need to matter. Because even if I am invisible, I am still there, thinking and feeling, and holding things up in the background.