Your Life Has Value Beyond Measure: Disability and Poverty In the United States

This is a story about why it’s so important to get medical help, even if you can’t afford it. It is so hard to break the habit of ignoring our own pain because poverty won’t let us get help. Because we have to.

The number one killer in the US isn’t heart disease. It’s capitalism.

I have been permanently disabled and chronically ill since I was a child. I live with severe chronic pain and debilitating damage in my entire body. I am also on SSDI, which means that I am not allowed to earn more than $15k a year or I lose my disability insurance. This makes medical care unaffordable.

The combination of extreme, constant pain & the knowledge that healthcare is unattainable, leads to not getting help until it is too late. It is a trap that has taken countless lives. People who deserved to live but were told that healthcare was only for the privileged. Not us.

Because I couldn’t afford treatment, I didn’t try after the first huge medical bill. I ignored headaches, vision & hearing loss, & periodic paralysis. I crowdfunded a wheelchair. I tried my best to survive.
And then I fell in love with someone who forced me to get an eye exam.

I moved in with my girlfriend. She immediately noticed how massive the fonts on my pc are & asked if I had ever considered glasses. I hadn’t, because that involved going to the doctor and that was for rich people. She would not take no for an answer. So off to the doctor I went.

The first doctor I saw was alarmed at the amount of nerve damage in my eyes and referred me to a colleague.
The second doctor I saw was very alarmed at the massive amount of swelling in my eyes and brain, as well as nerve damage & asked how quickly I could get to a top neuro-ophthalmologist he knew.

I knew this would be expensive, but I was now being told that there was a very high risk for stroke, blindness, and/or death, so away we went. We were at the hospital for over 24 consecutive hours. My eyes were dilated twice because the dilation wore off before they could finish all the tests. So many tests.

The neurology team discovered that I had over 4x the amount of pressure on my brain that a person is supposed to have, & they did their best to relieve it. The cause is still unknown. I have been prescribed medication to treat the condition, but the optic nerve damage is permanent. My eyesight will not improve.

The doctors say that if I had not gotten treatment when I did, I could have died. Without ongoing treatment, I am still at risk of dying. I have to be extremely diligent with my new medication to prevent this. Medicare refused to cover it so I had to pay out of pocket. 1 month of the generic version of the prescribed medicine costs $260. That is over 1/3 of my SSDI check.

I have several more medical follow-up apps & neurological procedures and all of this is mandatory for my survival but costs more money than I am legally allowed to earn. The US Government’s mandate to permanently tie disability status to income limits is killing disabled people.

Millions of people are living with the uncertainty of inadequate healthcare coupled with inescapable mandated poverty. Medical care shouldn’t be a privilege. It should be free. Instead, it’s denied to those who need it most & gatekept behind a paywall thousands of dollars high.

All of this is why I avoided treatment for over 20 years until it was clear that I had no choice. Regardless of your ability to pay, you deserve to live. Poverty is not a moral failing. Your life has value beyond measure. If you are in pain, please get help before it’s too late.