Thursday, April 23, 2009

Choosing to do things anyway!

As I said above, I spent yesterday with my soon-to-be five-year-old nephew Luke. He wears me out, but I love it. I love that we are so close (along with my sister and her other 2 kids who I also adore - they are a bit older and don't need babysitting anymore), and I love that my sister can call me for help and I can feel useful for a change by babysitting. As I also said, my sister felt sad that I only thought myself useful on Wednesdays when I babysit. I thought about it, and realized that I haven't come as far as I thought I had on that front.

Let me start with, I love spending the day with Luke, even though I know it's going to hurt. As with doing things with any of my friends, I choose to do things even though I know I will pay for it. It's very liberating to know that I am making that choice. My pain isn't making choices for me, and, more so, my fear of my pain isn't making choices for me! I choose to do something, knowing it will hurt. And generally, it's worth it. I have always thought that "the pain that I earn is better than the pain that I get for no reason." I can sit home, and I will still hurt. Or, I can choose to go out and enjoy time with friends &/or family, and I will hurt, but I will have had a good day. My choice!

But back to the useless thing. When I was first forced to stop working (back in 1994) due to the pain and all of the medications, I felt strange and out of sorts. I felt like people would look at me differently because I didn't have a job - I didn't "do" anything. It wasn't that I defined myself by my job, but I felt like I was supposed to at least have one.

Then, when I got on the tax-payers' payroll (ie started collecting Social Security Disability), I felt even worse about myself. There are so many people who cheat the system, who steal money that they are not entitled to, that it leaves an ugly blemish on those of us who honestly need the help. I feel the stigma of being on Public Assistance. Why? I had a job, I paid my taxes, I did all the right things, and because of something completely out of my control, I was unable to work. Not that I didn't want to work, I was unable. Believe me, I don't think there is a chronic pain sufferer alive who wouldn't trade their "life of leisure" sitting at home in pain, for a job. I would work any job rather than feel the pain that I feel every moment of my life. I almost said "every waking moment," but it's in my sleep too. I have night terrors when I wake up screaming - a blood curdling shriek, my other half would say.

[As an aside, my other half is John. We are not married, but we have lived together for a while. At my age (44) and stage in life, the term boyfriend sounds absolutely ridiculous, leaving me not knowing what to call him. He will be John here, but sometimes I also call him my husband just for terminology sake.]

I would have some dream like I'm being flayed or burned alive, or someone is pulling my leg off. I wake up screaming, and know that it's my pain invading my dreams. I don't even get sleep time off from the pain.

Anyway, when people would ask me "what do you do?" I would shamefully say "I'm on disability." Somehow I felt "less than": less worthy to be in an intellectual conversation, less worthy than all those hard-working folks who were having to support me. John finally made me a sign and hung it in our apartment that said "My job, the one for which the government is paying me, is to take care of myself and get well." He was right of course. My full time job was to manage my pain. And yet, I still didn't know how to answer the question "what do you do?" Why am I still embarrassed to be on public assistance? It's not my fault, nor is it my choice. And yet, the stigma sticks to me. Or do I stick to it? I know I'm too hard on myself, but I still feel less respected because I don't work.

I now answer the question with "I am unable to work" because, somehow it feels better to imply that I can't work, not that I don't want to. But I shouldn't have to justify. I am exactly the type of person that the system was set up for. This is America, we help those less fortunate. That's me: I did it all right and played by all the rules, and now I find myself unable to work. It's not my fault.

Of course, then there's the inevitable follow-up question which is "what's wrong with you?" I work very hard at not "looking sick," at not even looking like I'm in pain. And yet, if I answered the question with "I have cancer," people would say "oh, I'm so sorry," and they would instantly understand. I say "I have RSD," people say "you have what now?" Ok, "I have an incredibly painful nerve disorder for which I take 40mg of Methadone per day, and anti-depressants so that I don't lop off my own head from the pain .... oh, TMI?" Not only is it too much information, but it's intrussive. Why do I have to justify why I'm on disability. I know people are curious, but do they really have a right to know what my health status is? Not that I mind answering questions, I just mind feeling like I have to justify myself. I mind the questions that feel accusatory instead of just curious. Perhaps that's just in my head, along with feeling useless just because I'm not out there doing something to earn my keep.

My job is to maintain my health as best I can, and manage my pain. That's it! Now I just have to believe it.

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