Bryan Allo Photography

I’ve been seeing this picture every time I turn on my laptop since it’s been my desktop background for many months.

It’s a gem, isn’t it?

However, it’s more than just one of my favorite images from a pool photo shoot last year with my friend, Bryan Allo (he’s awesome, by the way).

Several months ago, when I first made this my desktop background, I found peace and power in its resignation. A sort of calm strength as I resigned myself to sinking deeper into my life as a poor, disabled person without much agency over my future. I saw it as a letting go – an acceptance of my hard life and a determination to maintain grace despite sinking.

I knew I would keep dreaming, doing, being. But I also knew there would be no housing stability. No living wage. No permanence in my independence. I knew my future was only as strong as my frugality to maintain a facade of stability for as long as my dollars lasted over and above the meager Social Security Disability income that didn’t match my survival budget.

I was holding my breath here. Holding my breath so I could maintain a pose for the outside world to see my hold-it-togetherness, something I’ve gotten quite good at while being impoverished.

Continue reading Incubating Reality | When Dreams Come True →

My previous post, The Work of Being a Professional Patient, needed a second chapter. There’s more to that broken system than simply being an unpaid professional patient. In addition to the phone calls, meetings, emails – the legwork of managing our healthcare as chronic disease patients – there’s a lot of money involved, and a lot of it flows out of the pockets of people who can’t afford the care they need.

The system is broken.

It is a system designed for healthy people to get catastrophically sick and go from there. A system that punishes people for being sick but provides no support to keep them from getting sick. Only $251 is spent per capita on public health measures aimed at proactively preventing illness.

The American healthcare system pads the wallets of health insurance and big pharma companies and often doctors and nurses too, then forces patients to do their work for them. America, land of the sick, home of the outsourced labor in our own back yards: people paying corporations a big chunk of their income for the privilege of managing their own healthcare.

Privilege is a dangerous word. I’m privileged? to be chronically ill and I pay over 10% of my monthly budget on my healthcare premium alone, after the assistance of the federal subsidy intended to keep my rates within my income limits. This does not include my out of pocket expenses on doctor visit copays, prescription copays, over the counter NSAIDs, heating pads, and various treatments to manage side effects of either medication or illness. Continue reading The Affordable Care Act is Not Affordable for Me →

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