I haven’t posted on my blog for a while because I’ve been ill. My disease makes me very sensitive to heat. So sensitive that this black person has to wear sunscreen whenever I’m out in the sun. You should have seen me the first time I got sunburn. I was going to go to the doctor because I couldn’t figure out why my skin was peeling off. I’ve talked about my auto immune arthritis on here before but in light of some of the responses I’ve heard to the Supreme Court upholding “Obama care” I thought I’d share my thoughts.
Sorry if this feels a little disjointed but I’m not going to do a lot of editing on this because I am having a hard time just sitting up long enough to type.
The day of the ruling I re-tweeted a list someone compiled of people saying that they are giving up on this socialist country and moving to Canada. This was one of the funniest things I’ve ever heard. One person tweeted me back with a comment about how bad the Court’s decision was. I asked if he could see the humor in moving to Canada in spite of his political views. He said he could but also said something else. “I’m a social liberal but a fiscal conservative.” After originally accepting that I realized I had no idea what the hell it meant and whether or not it was even possible.
When I was first diagnosed when I was 16 my mom had just enrolled me in our state’s health plan for children. Even though she was a full-time worker making about $22,000 per year she did not have the option to add her children to her work’s health insurance. I had been an extremely healthy kid involved in a different sport for every part of the year. Then at 16 my body gave up on me. At 17, I spent three days in the hospital getting inter venous drugs as a last resort. My mom didn’t tell me then but now I know the doctor was worried I was going to die because I was deteriorating so rapidly. I saw the bill. $20,000 for three days that saved my life. Thank God the state paid for that or mom would have gone broke to save her child’s life. So as a social liberal you have to believe I deserved to live. But as a social conservative you don’t think the government should have paid for my life. But that is where I have the trouble. If my mom had paid for that hospital bill we would have ended up on welfare, food stamps, and possibly homeless for who knows how many years. I don’t understand how that is better and more cost-effective than having the government give me healthcare.
My mom was not forced to get me, a healthy child, healthcare but I’m glad that when she found out about the state program she did or we would have been out of luck.
After I got laid off from my job at one of the studios, I applied for health care because even though I had been in remission for nine years my childhood experiences taught me that anything could happen. I was denied because of my previous condition. I sighed and continued to look for a job. I applied for a job at the USPS for the holiday season and after passing the tests with perfect scores they asked me to speak to a nurse to answer some questions. It was part of the process so I thought nothing of it. I was applying for a desk job where the only lifting would be that of my fingers to hit the next key. The woman asked me if I had been denied for health insurance in the last year. I answered honestly and we laughed at the insurance companies with their rubber stamps. Moments later, I was taken outside and dismissed because they could not hire me with my condition. I was so angry boiling hot tears scorched my face. I wailed to my mom if my past health would be a hindrance to me throughout the future. I stayed on unemployment a few more weeks because of that. More money from the system because of my health problem. I realized I could only get healthcare from a large corporation that had too much money and employees to ask those questions. So my talents and education could not be shared at a small business. I took a peon job where I was only a cog in a great machine.
Sadly, as I was tolling as a cog my remission ended. I did everything I could to hold on to that machine. I didn’t want to be without a job. Without a contribution to society. I held on until I broke. Depression set in as I believed I was worthless without the means to be the person I chose to be. There were three types of people in my therapy groups. One, the chronically depressed. They’d struggled with it off in on throughout their lives. Two, the grief-stricken. Sons, daughters, mothers, brothers, all dead. For some reason these people thought they could have stopped the accident, the fire, the pills and their lives were torn apart. Three, the useless. Like me, these were the people who had been yanked from the life they knew and thrown into the deep end of the pool. A laid off fortune 500 executive, a broken family man who could never fully recover from his accident, the woman suddenly tasked with everyone else’s job who finds out she can’t do it all. People who not only want to be part of the productive world but when they can’t their lives fall apart.
One thing I’ve learned since I’ve been sick is most people who need and use the system are very quiet about it. We are ashamed and don’t want the world to see us, see what we consider a failure.
Back to the beginning of this post, Canada. For a couple of years now I’ve been debating on breaking the law and renting some form of mail box in Canada so that I could get hook worms shipped to me. Some people say hook worms help auto immune diseases by secreting something that suppresses one’s immune system. Despite being completely harmless and easily eradicated, the FDA won’t allow them to be shipped to the US. Our healthcare system is broken. Insurance will pay ten to twenty thousand dollars a month to give me infusions but won’t allow a one time payment of $3,000 for me to swallow some worms. Yes, I am that desperate to swallow a capsule full of worms. That’s how much I want to work again. I don’t want to be on disability. I don’t want my body to dictate what kind of life I have. I want to stand, walk, run, date, work, park at the other end of the lot. I want to be able to choose.