ImageIt is a ritual that I started only recently.

Just before I hop in the shower, I put two or three large towels in the dryer, so they are nice and warm and I can wrap myself in them when I get out. It is a simple thing, but I love it. It makes me feel special. Luxurious.   Like I should be eating bonbons and watching old romantic movies with my feet up. I’m sure lots of people with money do the same thing. It is a ritual I can share with them that is not out of my reach.

The thing is, I am broke. I have several disabling conditions that prevent me from working full time. Consequently, I qualify for several low-income benefit programs.  Social Security Disability Income. Medicaid. Food stamps.

It wasn’t supposed to be this way. When I first signed up for all these programs in college, they were supposed to be temporary. I would have these benefits while I was in school, and after I graduated I would get a job and pay taxes into the system that had provided me with assistance.

It was a simple plan, but apparently, God didn’t like it.  I worked for a while, but that didn’t work out well, and then got incredibly sick, requiring many surgeries and lingering illnesses. Around the year 2000, I came to the conclusion that I couldn’t work full time and signed up for benefits again.

When I was a little girl and people asked me what I wanted to do when I grew up, I did not look at them with big brown eyes and say “I want to live on Social Security Disability payments forever.” The situation that I am in is not one that any person aspires to. But I am here. And it looks like I am going to stay here.  Unless I win the lottery or write a New York Times best seller, I will be stuck in a system that does not allow me to get ahead for the rest of my life.

Last year I was published in Chicken Soup for the Soul books more than once.

I got a call yesterday from a guy from Social Services. He told me that since I had been published, a number of my food stamps was being cut in half.  He also said that it was possible that I would lose more in food stamps than the income I made from the Chicken Soup story.

There is a program in Kansas that allows people who are Medicaid eligible to work without losing all of their benefits. The program is called Working Healthy.

One of the things that I have done in the past is sit on the state committee who designed the program. As someone who utilizes it, I know what it is about. I was there when the rules and regulations were being made.

So I told the guy from social services that I found it discouraging that I was probably going to lose more money than I was paid for being published, he said, in essence, “Well, if you want to keep all your food stamps, just never get anything published again…There is a dichotomy between you saying you want all your food stamps and you being on a program that encourages people to be gainfully employed.”

I am working as much as my health allows. Where is the dichotomy exactly?

A few hours later I was on the phone with the people who oversee the payroll for the caregivers that I employ. Due to a misunderstanding of how the hours are calculated in a given week, they said that one of my caregivers worked over her maximum of 40 hours, so they just will not pay her for 18 hours. $180 for one of my caregivers was is huge and was gone because those were the rules. Nobody on the phone could understand in the least why I was upset. Really?

I tried to explain that I was in a very vulnerable position. Some days, I cannot wipe my butt in the bathroom without help. I can’t get in and out of bed, or the shower on my own. I don’t drive or dress independently. If one of my caregivers chose to walk away from me because they were not getting paid, I would be rendered completely helpless. The woman on the phone said, “There is nothing I can do about that”. The tone of her voice conveyed that she was tired of dealing with me and that she resented being kept on the phone.

I hung up, emotionally spent.

Do people not realize that I am on these programs out of necessity?

If I had a choice I would have a full-time job that would enable me to support myself without help from any program. In both of the scenarios, I was treated like I was trying to take advantage of the system.

I am not denying  that there are many people who take advantage of government programs. I am not one of them. I have learned that It doesn’t do any good to try to tell people that. Chances are they won’t listen, and will choose to think the worst about me no matter what.

There doesn’t seem to be a way out of my circumstances. I am stuck in a system that doesn’t allow me to get ahead. It’s discouraging.

Yesterday was a hard day.

I took a shower and wrapped myself in a hot towel.