My friend Craig was apologizing for being screwed up the other day. It seems that while speaking to someone he met, he let out that he is on disability and the inevitable question came. "What do you do all day?" I have been asked the same thing many, many times. He then went on to tell me that he feels "Screwed up for sitting around watching cartoons all day". I wanted to make him feel better and did not know what to say so I said, "You're talking to someone so screwed up I can't get to sleep at night unless there is a war movie on."
That is how screwed up I am and I think I am like most people on disability for it. I feel guilty for being screwed up. I feel guilty that people sometimes have to take care of me. I feel guilty that I no longer support myself. Craig feels guilty too. He did not mean to tell this person that he was disabled and did not want to explain the nature of his disability. I feel the same. When I have to talk about it I usually emphasize the chronic pain and joint problems. They look at me and sometimes they say it out loud but mostly they think it super loud. "You could work if you wanted to." That is what the 'what do you do all day?' question really means.
Some people seem angry when they hear I am on disability. They work all day at jobs they hate and here I am getting free government money. You can see it in their eyes and hear it in their words. You could work. What do you do all day. You don't seem sick to me. These people will start by telling you about someone they know who is screwed up to. If their screwed up friend or family member works, they mention that. They will even talk about work one could do under the table, especially if they think I am faking or scamming the government. It really seems that for some people scamming the government would be okay as long as I also worked. They do not resent the government money I get they resent that I do not work as well.
Some people seem jealous. They ask me how they can get in on this thing. How did I get disability? How can they get it? How much do I get? What other benefits do I get? They imagine that I live in the lap of luxury. I have it so easy, just collecting the free checks. They are always disappointed when I explain reality to them. Reality is that it took years to get help for my problems. It took homelessness. It took suffering. It took in the end another suicide attempt and me saying out loud "I know that eventually I will have an episode and succeed in killing myself even though when in my right mind I do not want to die."
Some people are sick and having medical problems. They look to me for advice on how to move their case along. They are suffering and afraid. If their problems keep getting worse they will end up like me. They want to get disability and medicare and the reality when I explain it is even more frightening. I advise them to get a lawyer first. I advise them to tell their doctor, if they have medical care, that they are severely depressed over their medical and financial problems. I advise them to make as much as they can of any problems they are facing. They have to do this in order to be taken more seriously. Yes they will be accused of hypochondria. They will be anyways in the end. If all else fails I tell them what got me on the disability and medicare.
I became so depressed that I became delusional. I thought that I could jump off a bridge and float over 100 miles downstream on the river and become one with the ocean when I drowned. I thought it would be wonderful until I actually jumped. The water in our river is all runoff from the melting mountain snow and very cold. It was so cold it woke me up. I realized that people were watching me and if I was not careful they might try to save me. I thought about my daughter and I got out on my own.
I do not recommend jumping off a bridge to anyone. It still took a year to start getting disability. It took another year and a half after that to get on medicaid.
I told Craig that if people ask such questions in the future he should just say that he spends several hours every day on pain management. He does. He has had surgery on his back for a problem that still causes him extreme pain. That he has a couple of hobbies and has to help care for his partner who is also disabled. It definitely helps to have your little speech prepared for people like that. It avoids conflict and hard feelings.
I tell healthy people, if they give me a hard time, that there is no real safety net. I tell them that if they get sick like I did they will go through this too. They do not believe me. They look down on me from the safety and security of their normal lives and it comforts them to know that they will never end up like me because they work hard and pay their bills. I did too, once.
This week: This week I am having severe allergies. I usually ignore the symptoms since I can't afford over the counter meds for it. It is only a problem at night. You see my father used to put his hand over my face sometimes when he came into my room at night. I do not think he was trying to suffocate me, but that is how it felt. When I am congested at night I have nightmares and can't sleep. My dreams become scary and panicked. I have to wake up and get away! I took nyquil before bed last night and it kept me from getting congested during the night and I slept.
I have been thinking a lot lately about DOMA/DADT and LGBT rights. My parents were very old fashioned and enforced gender roles on us as children. I was always a bit of a tomboy. To my parents that meant I was a lesbian. I wanted to play with hotwheels not barbies and I was a lesbian. I wanted to learn how to do sheet metal work like my father taught my brothers and that meant I was a lesbian. I got into punk rock and got a mohawk and I was a lesbian. I joined the military(first of my mothers children to do so)and I was a lesbian. I know this is why I feel so strongly about LGBT rights. I know what it is to be attacked just based on someone's perception of your sexuality. I just believe that everyone should be loved and accepted as the person they really are. I do not care if it is nature or nurture. I believe that like brown hair or blonde hair LGBT is just a normal part human variation. I definitely do not think it was a mistake.